News Article | October 28, 2016
eRedbook, the electronic Personal Child Health Record (ePCHR) developed in a partnership led by Sitekit, has received clinical assurance and endorsement by the Royal College of Paediatrics and Child Health (RCPCH). In a statement released on Monday, the RCPCH states that “after two years of collaborative working with NHS colleagues and private sector partners, the RCPCH is pleased to announce its endorsement of the eRedbook: a digital initiative which sees the content and ethos of the Personal Child Health Record (PCHR) transferred to a more secure and easily accessible online format for parents and health professionals to use in the management of a child’s healthcare.” eRedbook is the first Personal Health Record in the UK to be endorsed by a Royal College. The endorsement comes in time for Trusts that are looking to use Nursing Tech Fund 2 to obtain funding for offering eRedbook to new parents. A total of £35 million is available for NHS Trusts that wish to innovate the delivery of care and free up more time for patients through the use of digital technology. eRedbook is a prime example of a Personal Health Record that enables collaboration between health professionals and parents, offering parents a new way to interact with the health and development of their child. It is currently being trialled by Liverpool Community Health NHS Trust and South Warwickshire NHS Foundation Trust. Dr David Low, Chair of Royal College of Paediatrics and Child Health’s Informatics for Quality Committee, said: “Using digital tools, the eRedbook is an important example of the paradigm shift of clinician to citizen of management of healthcare – an important move that brings the red book into a 21s Century way of working.” “This development which is professionally assured, and complies with the standards established by the Royal College of Paediatrics and Child Health, provides the mechanism to improve parent and children engagement, and allows them to co-manage, with professionals, their care and the recommendations of the healthy child programme.” Dan Moulin, Sitekit Project Director for eRedbook, said: “This is the first untethered Personal Health Record to be endorsed by a Royal College. This forward thinking will help trusts to rapidly adopt the innovation and deliver the vision set out in the ‘Five Year Forward View’ and ‘Personalising Health and Care 2020’. Providing parents with a personalised health record that they can share with clinicians is a really important part of the ‘Digital Revolution’ that is happening in healthcare.” Jane Banks, eRedbook Year Zero project lead at Liverpool Community Health NHS Trust, said: “The Royal College endorsement is exciting and really important. The red book has been around for many years, so it is important to professionals that the Royal College has endorsed this new version. We hope it will encourage other organisations to come on board and help develop the eRedbook.” About eRedbook The Personal Child Health Record (PCHR) known colloquially as the “Redbook” is given to all new parents in the UK to manage the health and development of their child in partnership with health professionals. The PCHR forms the core record of the administration of the Healthy Child Programme in England. It is a shared record that can be used by both healthcare professionals and parents across multiple settings and borders, supporting the coordination of care. eRedbook is the digital version of the PCHR, and can be offered to parents as an alternative for the paper Redbook. For parents, eRedbook is available online on smartphone, tablet or PC, providing greater accessibility.eRedbook promotes collaboration between parents and health professionals, engaging parents in decisions about their child’s care. The transactional record encourages them to engage in context rich information which is designed to be personalised by a child’s age, condition, health plan or location. For clinicians, eRedbook can automatically flow information recorded by parents and health professionals, to and from clinical systems. This dramatically improves information sharing and reduces information rekeying; freeing valuable time to care. Data entry of growth information is also easier to enter and much more accurate. For Trusts, in addition to health benefits, there is the potential for significant financial benefits: reducing DNAs, digitising communication of appointments, letters, and leaflets between health professional and parent could save the NHS millions of pounds every year. Highlights: Mobility – improved access for parents, available anywhere online Engaging – context rich, providing parents a personalised care record Participation – enabling partnership between health professionals and parents, leading to better health outcomes Collaboration – supporting the coordination of care across multiple services and boundaries Freeing time to care – enabling information to be captured once by automating the flow of information Trusted – assured clinically and compliant with the PCHR standard eRedbook is developed by Sitekit, in partnership with the RCPCH, Harlow Printing, Microsoft, dallas (Delivering Assisted Living Lifestyles at Scale) Year Zero programme and NHS partners. A Clinical Advisory Group and inter-collegiate PCHR Committee oversee the eRedbook’s development. eRedbook can be procured through Gov.UK’s Digital Marketplace. About Sitekit Sitekit is a healthcare technology company with a vision for a transformed health and care sector that enables people to enjoy longer, more independent and healthier lifestyles, assisted by familiar consumer digital technology and joined-up public services. Sitekit is delivering this vision by working in partnership with its 80+ NHS customer base and in collaborative research projects with university and industry partners. These projects place the citizen at the centre of managing their health, wellbeing and lifestyle data. Sitekit has a key role in all four of the £23m TSB funded DALLAS projects that are shaping the UK market for future digital health and care service delivery. One of those projects is Year Zero, aimed at deploying Personal Health Records such as the eRedbook in close partnership with clinicians on the ground. The key innovation concept of the PHR (‘Personal Health Record’ or more broadly, Personal Held Record) that the Year Zero project was set up to validate, is that the record is a secondary record owned by the patient, not the provider. This key change in approach, which actually emulates the personal held paper record, enables easier (consented) information sharing by the patient or parent, removing many of the organisational information governance barriers that have previously prevented patient-centred records from being deployed successfully. Sitekit has also developed a Self Care Framework (SCF), in partnership with other Dallas partnership projects, consisting of a software platform and information governance arrangements that enable health professionals and patients to use self-care and self-management services. The SCF is enabling clinicians in Liverpool to ‘prescribe’ Apps, Personal Health Record’s and digital step-down care services with secure, consented information sharing between statutory systems, personal devices and the patient’s informal circle of care. As a Dallas partner, Open Identity Exchange (OIX) member and partner in the NHS England’s Citizen Identity ‘Alpha’ project, Sitekit is well positioned to offer advice and consultancy on Information Governance (IG) and deployment of identity (ID) services for authentication of staff and citizens in digital health services. For further information please contact: Madelon Kortenaar email@example.com / +44 784 502 0634 / +44 845 299 0900 International Enquiries: +44 1478 613 300 Read more about eRedbook Video with more information Read more about Sitekit Media Contact Details Madelon Kortenaar, Sitekit Edinburgh, United Kingdom +447845020634 firstname.lastname@example.org The post Royal College of Paediatrics and Child Health endorses eRedbook appeared first on PR Fire.
News Article | November 7, 2016
INDIANAPOLIS -- Burke Mamlin, MD, and Paul Biondich, MD, of the Regenstrief Institute and Indiana University School of Medicine will be honored on November 12 with the 2016 Donald A.B. Lindberg Award for Innovation in Informatics. The award will be presented by the American Medical Informatics Association (AMIA), the largest international professional biomedical informatics association, at its annual symposium. Dr. Mamlin, an internist, and Dr. Biondich, a pediatrician, are pioneers in the development, testing, and use of open source software to support the delivery of health care in developing countries. AMIA's prestigious Lindberg award recognizes individuals for a technological, research, or educational contribution that advances biomedical informatics. The work leading to the award must be conducted in a not-for-profit setting, and the adoption of the particular advance by the informatics community must be on a national or international level. The honoring of Dr. Mamlin and Dr. Biondich is the first time that the Lindberg award has been presented to more than one person. OpenMRS, the system that grew from their initial concept, is designed to be usable in resource poor environments and can be customized with modules -- laboratory test ordering and reporting, for example, or public health reporting -- without programming. It is intended as a medical record system platform that can be adopted and modified wherever required, eliminating the need to develop a system from scratch. In 2015 when commercial electronic medical record systems weren't equipped to handle the problems encountered in the Ebola outbreak in West Africa, OpenMRS, supported by the worldwide OpenMRS community, was adapted to help with the management of the large number of patients in extreme conditions. Today, the OpenMRS community forms the world's largest open source project to develop health information technology for resource-constrained environments. The OpenMRS platform is deployed in more than 80 countries throughout the world. Dr. Mamlin is a graduate of Wesleyan University and earned a medical degree from Indiana University. Dr. Biondich is a graduate of Emory University and earned a medical degree from the University of Florida. Both completed National Library of Medicine-supported medical informatics fellowships at the Regenstrief Institute and joined the institute's Center for Biomedical Informatics in 2001. Dr. Mamlin is an associate professor of clinical medicine and Dr. Biondich is an associate professor of pediatrics at IU School of Medicine. In addition to OpenMRS, of which he is the development lead, Dr. Mamlin's work has focused on computerized physician order-entry and provider interfaces with medical record systems. Dr. Biondich, who leads the Global Health Informatics program at the Regenstrief Institute, also developed a decision support system, Child Health Improvement through Computer Automation (CHICA), and leads global efforts on health information exchanges within resource emerging environments. "With amazing technical, organizational, and leadership skills necessary to make their dreams a reality, Drs. Biondich and Mamlin have helped create a movement that is supporting the care for the most vulnerable among us," said Shaun Grannis, MD, interim director of the Regenstrief Institute's CBMI, associate professor of family medicine at IU School of Medicine and a fellow of the American College of Medical Informatics. "This recognition is well deserved." The Regenstrief Institute's CBMI is an internationally recognized leader in biomedical informatics focused on improving health care through informatics. The center develops and applies health information technology solutions to generate knowledge about health, disease and treatment, help clinicians make optimal decisions, empower patients, and inform healthcare policy. The center focuses on clinical applications, computer-based decision support, data mining, advanced analytics, healthcare information standards, and global health. These applications and tools are widely recognized for their roles in improving quality of care, efficiency of healthcare delivery, reducing medical errors, and enhancing patient safety. Approximately 2500 informatics professionals are expected to attended AMIA's 2016 symposium in Chicago where Dr. Mamlin and Dr. Biondich will be honored.
News Article | February 15, 2017
Thailand has become the first Asian country to eliminate mother-to-child transmission (MTCT) of HIV, thanks to a pragmatic multi-sector response backed by strong political commitment and heavy government investment, a study published in Paediatrics and International Child Health reports. Such an early, concerted response allowed the country to successfully address the four prongs of the recommended World Health Organization (WHO) elimination strategy. As a result, MTCT rates were reduced from 20-40% in the mid-1990s to 1.9% in 2015 (surpassing the WHO elimination target of The WHO strategy focuses on the following four prongs: primary prevention of HIV in women of childbearing age; prevention of unintended pregnancies in women living with HIV; prevention of HIV transmission from an HIV-infected woman to her infant; and provision of appropriate treatment, care and support to women and children living with HIV. In Thailand, initiatives to promote condom use, provide information about the risk of transmission and introduce testing for pregnant and post-partum women were successfully implemented. For example, the 100% Condom Programme, which promotes 100% condom use by male patrons of commercial sex workers, has played a crucial role in preventing HIV infection in women of reproductive age. The success of such initiatives resulted in part from strong political leadership - the national AIDS policy of Thailand was transferred from the Ministry of Public Health to the Office of the Prime Minister in 1991 - and greatly increased investment, with government spending on the HIV/AIDS programme rising from US$684,000 in 1988 to US$82 million by 1997. The high rate of antenatal care provision in Thailand is also key. A voluntary HIV test with same-day results is offered at the first clinic visit, followed by re-testing later in pregnancy for HIV-negative women. For HIV-infected pregnant women, antiretroviral therapy (ART) is provided as soon as possible. Such treatment is now available at much lower cost, thanks to legislative changes which have allowed the non-commercial production of generic ART in Thailand. Counselling services at antenatal clinics also promote the use of dual methods of contraception to prevent unintended pregnancy in women with HIV. The study's author, Professor Usa Thisyakorn of Chulalongkorn University, Bangkok said: "Thailand has achieved WHO elimination of mother-to-child HIV transmission targets with early and concerted efforts of all sectors of Thai society. This provided numerous lessons learned in working together to safeguard children. Since children are the country's future, how the country responds to the problems created for them indicates how highly the country values its future." When referencing the article: Please include Journal title, author, published by Taylor & Francis and the following statement: Please note the article will not be available online until the embargo has been lifted. Taylor & Francis Group partners with researchers, scholarly societies, universities and libraries worldwide to bring knowledge to life. As one of the world's leading publishers of scholarly journals, books, ebooks and reference works our content spans all areas of Humanities, Social Sciences, Behavioural Sciences, Science, and Technology and Medicine. From our network of offices in Oxford, New York, Philadelphia, Boca Raton, Boston, Melbourne, Singapore, Beijing, Tokyo, Stockholm, New Delhi and Johannesburg, Taylor & Francis staff provide local expertise and support to our editors, societies and authors and tailored, efficient customer service to our library colleagues. For more information please contact: Sayjal Mistry, Press & Media Relations Coordinator email: email@example.com Follow us on Twitter: @tandfnewsroom Introducing Press Pass: journalist access to all Taylor & Francis Journal articles. Contact us for more details.
News Article | February 21, 2017
NEW YORK--(BUSINESS WIRE)--MetroPlus Health Plan announced today the introduction of its member engagement and rewards program. The MetroPlus Healthy Rewards Program is designed to engage members in specific healthy activities that improve their health, quality of life, and well-being. The new program encourages MetroPlus members to earn reward points for completing healthy activities. Members have already started receiving informational material about the program and can call or log on to MetroPlus’s website to learn more. Members can use the reward points they earn to order healthy items from the MetroPlus Healthy Rewards Catalog. As individuals complete their healthy activities, they will be able to visit the Healthy Rewards Portal via smartphone, tablet, or desktop to track their activities, redeem their reward points, and access personalized wellness tools and resources. The program also provides support to members over the phone. Members can earn rewards when they take steps to manage their diabetes, attend pre- and postpartum visits for a healthy pregnancy, take an annual Health Risk Assessment, and more. Many of the healthy activities rewarded through this program are tied specifically to chronic conditions. For example, a person who has diabetes can receive a reward for completing a HbA1c test to measure blood sugar level, or a person who has asthma can earn points by simply refilling their long-term asthma controller. Other rewards are tied to preventive health activities, such as visiting a primary care provider within 60 days of joining MetroPlus or participating in the Step-Up Walking Challenge. The program is administered by Finity, a leading health technology company. Finity’s Health Intelligence Platform uses ongoing, multimedia engagement and gamification through reward points to encourage members to participate in healthy activities. All rewards are tied to specific activities that can be easily tracked and measured. The closed-loop technology tracks member engagement by medium and activity, and evolves based on behavior. This targeted engagement methodology is proven effective to improve member health, increase compliance, and lower health care costs. The rewards that members can earn cover a wide spectrum of popular items – ones that promote physical activity (e.g., baseball mitts, basketballs, quilted sleeping bags, and activity trackers), others focused on nutrition and health (blenders, digital thermometers, polarized sunglasses), others for relaxation and fun (deluxe art sets), and still others for new families (boppy pillows, baby strollers, and car seats), plus much more. The higher the points earned, the more valuable the reward redeemed will be. “These rewards provide an easy and fun way to assist our members in their efforts to stay healthy and allow those enrolled with MetroPlus to reach their individualized health goals,” said Seth Diamond, Chief Operating Officer of MetroPlus. “The program is also cost-effective. By keeping members healthy today, we avoid more costly interventions later.” “This is the most innovative engagement and rewards program in New York City,” said Alexandra MacDonald, Executive Vice President of Population Health Management at Finity. “Using the health intelligence we gather for MetroPlus members, we can personalize engagement to maximize health behavior change. This results in high program participation, significant cost savings, and increased prevention and compliance.” “One of our most important goals is to improve not only our member’s health, well-being and satisfaction, but also the member experience with the plan itself,” Diamond said. “We are confident our new Healthy Rewards Program is a powerful way to help achieve that goal.” Since 1985, MetroPlus Health Plan has built a reputation for providing access to affordable, quality health care to eligible New Yorkers. A wholly-owned subsidiary of NYC Health + Hospitals, the nation’s largest public health system, MetroPlus is the plan of choice for over half a million New Yorkers. In addition to Medicaid Managed Care, MetroPlus offers Child Health Plus; several Medicare Plans; a Special Needs Plan (SNP) for people with HIV and their families; a Long-Term Managed Care Plan; MetroPlus Gold, a plan exclusively for New York City employees; FIDA and HARP plans, and more than five dozen NY State of Health Marketplace products. The company’s robust network of primary care doctors and specialists includes many independent community providers. Culturally sensitive, and fluent in more than 40 languages, MetroPlus staff is as diverse as the great city it serves. Visit us at metroplus.org and join the conversation at facebook.com/metroplushealth and twitter @metroplushealth. Finity is a leading provider of Health Intelligence Solutions. The Finity platform includes integrated population health management portals, multimedia member engagement and comprehensive reward program management. Clients include State Medicaid agencies and private health insurance companies. Finity provides the most proven-effective member engagement and rewards program in the industry to millions of health plan members across the country. NYC Health + Hospitals is the largest public health care system in the nation. We are a network of 11 hospitals, trauma centers, neighborhood health centers, nursing homes, and post-acute care centers. We are a home care agency and a health plan, MetroPlus. Our health system provides essential services to more than one million New Yorkers every year in more than 70 locations across the city’s five boroughs. Our diverse workforce of more than 42,000 employees is uniquely focused on empowering New Yorkers, without exception, to live the healthiest life possible. Visit us at nychealthandhospitals.org and stay connected on Facebook at facebook.com/NYCHealthSystem or Twitter at @NYCHealthSystem.
News Article | October 26, 2016
Our environment may be causing serious problems with lifelong implications for children, but a new national project that includes the Medical University of South Carolina may help change that. Roger Newman, M.D., works as a researcher and obstetrician at MUSC Health. "There's an obesity epidemic, there's an epidemic of asthma, there's an epidemic of disorders like autism and attention deficit disorder," Newman said. "These aren't just inherited. Something's happening to our children in our environment." John Vena, Ph.D., founding chairman of the MUSC Department of Public Health Sciences, is a co-principal investigator. He said only the first two years of funding have been awarded so far, but it has the potential to be the largest clinical translational study ever, in financial terms, for MUSC. MUSC's portion for the first two years combined has the potential to be about $9.6 million. Vena said the study, part of an effort by the National Institutes of Health to document those factors, will track kids' health over a seven-year period. It's called the Environmental Influences on Child Health Outcomes Program, or ECHO. MUSC will serve as a coordinating center for part of the project known as the Exposure Contributors to Child Health Originating from National Fetal Growth Study. The Exposure Contributors to Child Health Originating from National Fetal Growth Study team includes scientists from public health, obstetrics and pediatrics who will follow the children enrolled in the National Fetal Growth Study at 10 clinical centers throughout the U.S., including MUSC and Columbia University.NIH Director Francis Collins, Ph.D., said the researchers will try to ensure every baby has the chance to thrive. "ECHO will help us better understand the factors that contribute to optimal health in children." Vena said the MUSC team is in very good company. The first year's overall funding for the ECHO Program is $157 million, which is spread out among 35 institutions nationally. Over the course of the seven-year project, researchers with the MUSC and Columbia University-led part of ECHO will re-contact the 2,400 families involved in the National Fetal Growth Study and try to enroll the children in ECHO. The kids will become part of a panel of 50,000 children from diverse racial, geographic and socioeconomic backgrounds. The ECHO Program will analyze existing data and follow the children over time to address the early environmental origins of ECHO's primary health outcome areas, which are: Each group will work with the others to combine data that are collected in a standardized way. MUSC is involved in the ECHO Program because of the role it played in the multi-site fetal growth study, which established a standard for fetal growth that considered racial and ethnic differences. The data collected through the fetal growth study, including multiple ultrasounds on each baby, blood tests from the mothers and detailed pregnancy-related information, are being re-analyzed in the ECHO Program. Newman, who was the principal investigator at MUSC for the fetal growth study, said it's an exciting opportunity. "We talked many times about how great it would be if we had the chance to follow up on the children as they got older, because there's no group of children in the country where anyone knows more about what happened to their moms and them during pregnancy." The MUSC and Columbia University-led group has set three key goals. The researchers will: Look at the mothers' environments during pregnancy, including their exposure to persistent environmental pollutants (POPs) and stress, along with what they ate and drank. They'll explore how those factors may be linked to the children's metabolic health and neurobehavioral outcomes. Evaluate associations between fetal development and the later development of childhood obesity and neurobehavioral abnormalities. They'll look for maternal and fetal factors that may modify these associations. Come up with new ways to predict the risk of childhood obesity and neurobehavioral symptoms. They'll base this on fetal development trajectories and in utero exposures. Vena said the goal of ECHO is to gain a better understanding of environmental influences at each life stage. "The main outcomes we're looking at are obesity, endocrine disruption, insulin resistance, that type of thing. Also in neurodevelopment, conditions such as attention deficit disorder, autism - all of that will be assessed." The overall ECHO program is meant to provide significant information about which environmental factors might be affecting the health and wellness of the country's children so health care providers can offer better, more customized treatments and interventions for pediatric patients and contribute to better health and wellness for all children, Vena said. "To have this many capable, brilliant researchers coming together in the interest of significantly determining what environmental risks are placing our children at most risk is a wonderful testament to the power of collective data and our determination to work together for the good of our nation's children."
News Article | February 15, 2017
Frederica Perera has stocked a dozen freezers with an unusual biological bounty over the past two decades. Inside are vials of umbilical-cord blood, urine and placentas from more than 700 pregnant women and their children from the Washington Heights, Harlem and South Bronx neighbourhoods of New York City. This biobank has proved invaluable in her efforts to understand how urban environments influence children’s health from birth through childhood. Now, Perera’s team is gearing up for another challenge: developing a tool that can test her bank of umbilical-cord blood samples for common pollutants and use the results to predict later impacts on neurodevelopment and obesity. The scientists are also joining a major US government programme that seeks to understand how environmental, behavioural and social factors affect children’s health. Known as the Environmental Influences on Child Health Outcomes (ECHO) programme, the effort will support dozens of longitudinal cohort studies across the United States. Researchers working on the project will meet on 15–16 February in Arlington, Virginia, to make decisions key to its success: how to collaborate, and how to combine and compare the individual data sets. The ECHO project emerged from the ashes of the controversial National Children’s Study (NCS), a programme run by the US National Institutes of Health (NIH) that aimed to track 100,000 children from before birth to age 21. The NIH cancelled that study in 2014, after spending more than a decade and US$1.2 billion trying to get it off the ground. ECHO organizers say that their project will be different. By using cohorts that are already under way, they hope to side-step some of the problems that plagued the NCS, which had trouble recruiting participants, defining its hypotheses and sticking to its budget. Marrying up existing cohort studies will enable the scientists to study large numbers of children more cheaply than if they created one large cohort from scratch. Doing so will also let them examine rarer health outcomes and differences between subpopulations. But the approach brings its own problems. “The purpose of the national meeting is to try to combine the cohorts,” says Douglas Ruden, director of epigenomics at Wayne State University’s Institute of Environmental Health Sciences in Detroit, Michigan, and a member of the ECHO steering committee who is helping to lead a participating cohort. “They all have different goals and study designs, and somehow they have to merge them into one cohort — and that’s the hard part.” That will be a major challenge, agrees David Savitz, vice-president for research at Brown University in Providence, Rhode Island, who led an NCS pilot site. But Savitz is confident that ECHO will succeed because of smarter planning, better leadership and the quality of the cohort studies selected. He says that the programme director, Matthew Gillman of the NIH, is a respected scientist who has experience coordinating multiple projects. In September 2016, the NIH awarded $157 million to ECHO to support work on four main topics: obesity; airway conditions; neurodevelopmental disorders (including autism); and prenatal and postnatal outcomes, such as premature birth and birth defects. Ruden’s study has tracked about 1,000 mother–infant pairs for seven years. He has shown that exposure to lead during pregnancy might be associated with epigenetic changes in a woman’s grandchildren — specifically, shifting patterns of methyl groups attached to DNA, which can affect gene expression1. Under ECHO, Ruden will double the size of his cohort and look for similar impacts from prenatal exposure to other metals and organic pollutants. With their $1.5-million ECHO grant, Perera and her team are working to identify a biomarker in umbilical cord blood that would reveal whether a child was exposed in the womb to pollutants called polycyclic aromatic hydrocarbons. This group of more than 100 chemicals, particularly common in urban environments, can be traced to sources such as vehicle exhaust, cigarette smoke and coal-burning; many of them are thought to cause cancer. If the scientists can locate a potential biomarker, they could use samples and information from other ECHO cohorts to help test and validate it — and to look for links with alterations in children’s development or health. In the long term, scientists hope that ECHO will inform another component of the initiative: a network of clinical trials in medically underserved and rural areas to test treatments based on cohort findings. The trials are still being selected, Gillman says, but could evaluate things such as behavioural interventions to prevent obesity in rural areas. Some project leaders are nervous about ECHO’s future — and about funding for the health sciences generally — under the administration of US President Donald Trump, but Gillman says that both Republicans and Democrats in Congress have supported the project. “We see a bright future for ECHO, no matter the change in administration,” he says. “Our mission is to enhance the health of children for generations to come.”
News Article | November 7, 2016
A team of researchers at the Stanford University School of Medicine has used a gene-editing tool known as CRISPR to repair the gene that causes sickle cell disease in human stem cells, which they say is a key step toward developing a gene therapy for the disorder. The team went on to demonstrate that the mended cells could make a functioning hemoglobin molecule, which carries oxygen in normal red blood cells, and then successfully transplanted the stem cells into mice. The researchers say the study represents a proof of concept for the repair of blood-borne genetic diseases, such as sickle cell disease and thalassemia. A paper describing the findings will be published online Nov. 7 in Nature. Postdoctoral scholars Daniel Dever, PhD, and Rasmus Bak, PhD, are the lead authors; Matthew Porteus, MD, PhD, associate professor of pediatrics, is the senior author. Sickle cell disease affects 70,000 to 100,000 Americans and millions globally, inflicting suffering and high health-care costs. Children born in high-income countries typically survive with the chronic disease, while those born in low-income countries typically die before the age of 5. The disease results from a single mutation in the gene that codes for one of the protein chains that make up the hemoglobin molecule. Hemoglobin is the main constituent of red blood cells and allows the cells to pick up oxygen from the lungs and drop it off in tissues throughout the body, from the brain to the muscles. The sickle mutation causes the red blood cells to make an altered version of the hemoglobin that forces the red cell into a sickle shape when oxygen levels drop. The sickled cells tangle together, blocking blood vessels throughout the body and causing severe pain and disastrous health consequences. Gene therapy, generally, has been the holy grail of gene-based therapeutics since the 1980s, with just a sprinkling of individual successes over the years. Increasingly, though, better techniques are raising hopes for practical therapies that can permanently cure genetic diseases like sickle cell. "What we've finally shown is that we can do it," said Porteus. "It's not just on the chalkboard. We can take stem cells from a patient and correct the mutation and show that those stem cells turn into red blood cells that no longer make sickled hemoglobin." Porteus said that in previous work, he has targeted sickle cell genes with an older gene-editing technology but that the new CRISPR technology is faster and easier to work with. "We spent half a dozen years trying to target the beta globin gene using the old technology," he noted, adding that within one week of trying CRISPR, they had an editing tool that worked much better. CRISPR is a combination of an enzyme that can cut a selected DNA sequence and a "guide RNA" that takes the enzyme exactly where you want to make the cut -- in this case, at the sickle cell mutation. Once the mutated DNA sequence has been removed, other tools can help paste in a copy of the normal sequence. The Porteus team started with human stem cells from the blood of patients with sickle cell disease, corrected the gene mutation using CRISPR and then concentrated the human stem cells so that 90 percent carried the corrected sickle cell gene. The stem cells are a particular type, called hematopoietic stem cells, that make blood cells. The team injected the concentrated, corrected hematopoietic stem cells into young mice. "These stem cells have a property to be able to get from the blood system into the bone marrow where they then set up shop and start making other blood cells," said Porteus. When the team examined the bone marrow of the mice after 16 weeks, the corrected stem cells were thriving there. The corrected red blood cells needn't replace all of a patient's original sickle cells, said Porteus. If the proportion of sickle cells is below 30 percent, patients have no symptoms of disease. And corrected cells have about a tenfold advantage over uncorrected cells, he said. That's because red blood cells afflicted with sickle cell tend to sickle and die after an average of only 10 days. In contrast, the corrected cells live the length of normal red blood cells, about 120 days. So the numbers of corrected cells rapidly outstrip those of uncorrected cells. Although gene therapy research has made great strides in recent years, it has yet to be widely deployed, and no CRISPR-edited genes have yet been tested for safety or efficacy in human clinical trials. Examples of potential problem include unforeseen immune reactions or altering the wrong sequence of DNA -- so-called off-target effects. The effects of gene editing in general are impossible to predict. As Porteus said, "The consensus in the field is that there's no one test we can do to prove that something is safe. We can't just say, 'Oh, just run this test, and that'll show if it's safe or not.' That test doesn't exist." Instead, he said, a series of different tests may each offer some insights about potential safety. For now, Porteus and his team found that their corrected human hematopoietic stem cells seemed to behave like normal, healthy human hematopoietic stem cells. "We're excited about working to eventually bring this type of therapy to patients," said Porteus. "Stanford is building the infrastructure so that we can take our discovery in the lab and develop it so we can scale up the laboratory process to a process that will be needed to treat a patient. We hope to develop the entire process here at Stanford." The team's work is an example of Stanford Medicine's focus on precision health, the goal of which is to anticipate and prevent disease in the healthy and precisely diagnose and treat disease in the ill. Other Stanford co-authors are professor of pediatrics Kenneth Weinberg, MD; associate professor of medicine Ravindra Majeti, MD, PhD; assistant professor of pediatrics Anupama Narla, MD; postdoctoral scholars Andreas Reinisch, MD, PhD, and Mara Pavel-Dinu, PhD, Ayal Hendel, PhD; research associates Carmencita Nicolas and Alec Wilkens; research assistant Nivi Saxena; cord blood coordinator Sruthi Mantri; medical student Gabriel Washington; and undergraduate research assistant Joab Camarena. This research was supported by the National Institutes of Health (grants PN2EY018244, R01AI097320 and R01AI120766), the Stanford Child Health Research Initiative, the Laurie Kraus Lacob Scholar Award in Pediatric Translational Research and the Laurie Kraus Lacob Endowment Fund. Stanford's Department of Medicine also supported the work. Porteus has equity interest in CRISPR Tx, where he is scientific founder and a member of the advisory board. The Stanford University School of Medicine consistently ranks among the nation's top medical schools, integrating research, medical education, patient care and community service. For more news about the school, please visit http://med. . The medical school is part of Stanford Medicine, which includes Stanford Health Care and Stanford Children's Health. For information about all three, please visit http://med. .
News Article | November 30, 2016
National guidance for professionals handling cases of sudden unexpected child death which draws upon University of Warwick expertise are published today (30 November 2016). The guidelines, Sudden unexpected death in infancy and childhood, have been published by The Royal College of Pathologists (RCPath) and The Royal College of Paediatrics and Child Health and draws on research by Dr Peter Sidebotham and Dr Joanna Garstang from the University's Warwick Medical School. The guidelines aim to be sensitive to the needs of grief-stricken parents while also enabling an explanation to be found and make recommendations to each profession and outline best practice for each part of the investigation process. Dr Peter Sidebotham, Associate Professor of Child Health, at Warwick Medical School said: "In my work with bereaved families, I have come across terrible situations where parents have been kept in the dark or made to feel like criminals. I have also experienced some great examples of how families have been supported through the days and weeks following their child's death and how police and health professionals have worked together in a sensitive, thorough, and caring manner. Parents often tell me that what they want, above anything else, is to understand why their baby died, but also their hopes that by investigating their child's death thoroughly, we can work to prevent other families having to go through a similar experience." The new guidance aims to help to help agencies work together to share information and keep families included at every stage. The original guidelines published in 2004 followed high profile cases of miscarriages of justice involving the prosecution of mothers for causing the deaths of their babies. These events raised serious concerns about the role of the expert witness in court, issues about standards of proof, the quality of evidence and about the procedures adopted for the investigation of sudden unexpected deaths of infants. This 2016 edition of the guidelines have been extensively reviewed and updated by an expert working group from the healthcare, charity and justice sectors and cover multi-agency planning, supporting families, assessment of the environment and circumstances of the death, case discussion, the post-mortem and the inquest and role of the coroner. They are based on the best current international research. "We can never take away the tragedy of losing a baby suddenly and unexpectedly but we can ensure that families get the support they need during this terrible time in their lives. Every death must be properly investigated and parents are the first to ask why their baby died. Many professionals from different agencies become involved when an apparently healthy baby dies. It is therefore crucial that we have sensitive guidelines in place setting out how we can all work together while at the same time caring for the bereaved family." Baroness Helena Kennedy QC and Chair of the Working Group said: "It is important to remember that, in the majority of cases where a child dies unexpectedly and suddenly, nothing untoward has taken place. It is only in a small number of cases where something unlawful has occurred. Professionals investigating the sudden and unexpected death of a child have to strike a balance between maintaining justice for parents while ensuring the protection of the youngest amongst us who have no voice. This report takes a fresh look at how agencies can investigate unexpected deaths in infants with thoroughness, care, compassion and to the highest possible standards." The working group also recognises that further work is needed in the area of investigating sudden death in infancy and childhood and hope that this document will stimulate discussion and further research. For further details please contact Nicola Jones, Media Relations Manager, University of Warwick 07920531221 or N.Jones.firstname.lastname@example.org The report will be launched in Committee Room G, House of Lords Westminster, London SW1A 0PW on Wednesday 30 Nov: For more information about the launch please contact - The Royal College of Pathologists Tel 020 7451 6752. M. 0757 834 9018. E email@example.com "Understanding why a child has died is crucial for identifying the cause of death and determining whether it could have been prevented. Families want to know what happened, and why it occurred, both to help deal with the trauma of such a devastating loss but also to help alleviate anxieties about future pregnancies or other children. Unfortunately, in many cases, the death remains unexplained despite investigation. We need to continue research into understanding why and how apparently healthy children die suddenly and unexpectedly." Dr Geoff DeBelle, Officer for Child Protection, Royal College of Paediatrics and Child Health: "Every child's death is a tragedy. Many of these deaths are from natural causes such as extreme premature birth and its complications, congenital anomalies, infection and malignancy. Others relate to road traffic injuries. Only around 1% of such deaths can be directly attributed to abuse and neglect. It is incumbent on dedicated professionals to investigate all deaths in childhood to assist the coroner, to determine whether there is potential to prevent further deaths and to ensure that the parents and surviving siblings have appropriate explanation, advice and bereavement counselling. The new edition of the guidelines provide the most up-to-date and evidence-based guidance for the multi-professional investigation of all deaths in childhood. It will ensure that such investigations are undertaken in a uniform, thorough and sensitive manner across the UK." Sudden unexpected death in infancy and childhood (2nd edition) - Multi-agency guidelines for care and investigation encompasses the statutory duties of individual professionals and agencies to investigate all sudden and unexpected deaths in infancy and childhood according to Working Together to Safeguard Children: A Guide to Inter-agency Working to Safeguard and Promote the Welfare of Children (Department for Education, 2015) and best evidence. Such guidance is based around regulatory structures in England, but it is intended that the principles of the guidelines can also be applied in areas in which other systems are in place. The Royal College of Pathologists is a professional membership organisation committed to setting and maintaining professional standards and to promoting excellence in the practice of pathology. As well as medically qualified members, the College has scientists amongst its membership and represents 19 pathology specialties. It has over 10,500 members who are senior staff in hospital laboratories, universities and industry worldwide. The Royal College of Paediatrics and Child Health (RCPCH): contributes to setting and maintaining standards for the education and training of doctors working in paediatrics and child health in the UK and internationally. The RCPCH influences and shapes health policy and health services for infants, children and young people in the UK, advocates on their behalf, and strengthens the science and research base of paediatrics and child health. To date, the RCPCH has over 17,000 members and fellows. The Lullaby Trust provides specialist support for bereaved families, promotes expert advice on safer baby sleep and raises awareness of Sudden Infant Death Syndrome (SIDS). Working with the NHS we run a national health-visitor led service for bereaved parents, Care of Next Infant (CONI) programme, which supports families before and after the birth of their new baby. We are committed to supporting research to understand why babies die suddenly and unexpectedly and to find out more about how to reduce the risk of these tragic deaths. The Lullaby Trust also runs an information line for parents and professionals (0808 802 6869) and a dedicated line for bereaved families (0808 802 6868). Both are free to call from landlines and mobiles. In 2008, local Child Death Overview Panels (CDOPs) were statutorily established in England, with the responsibility of reviewing the deaths of all children under 18, their main function is to prevent future child deaths. Currently there are 92 such panels and during 2015 the panels reviewed 3665 child deaths. One in five deaths is avoidable and other modifiable factors are present in one third of the cases; multiple risk factors were present in 60% of children where the death was sudden and unexpected and occurred and/or was associated with abuse or neglect
News Article | February 15, 2017
ACT.md, a national provider of team-based care coordination technology and services, today announced a collaboration with University of Iowa Stead Family Children’s Hospital to improve systems of care for children and youth with special health-care needs (CYSHCN). More than 150,000 Iowa children and youth have special health care needs including chronic physical, developmental, behavioral, and emotional concerns. These needs often impact the entire family and can require the involvement of multiple service systems. The Division of Child and Community Health in the Stead Family Department of Pediatrics is developing a Shared Plan of Care template and protocol to be used in coordinating care across systems for these children and families. “Iowa has a long and proud tradition of meeting the health needs of children across the state,” said Thomas Scholz, MD, Director, Division of Child and Community Health. “This collaboration between community-based providers, UI Stead Family Children’s Hospital, and ACT.md is a wonderful step forward for longitudinal care planning that we believe will improve care coordination for our children with complex health and social needs.” Using ACT.md’s secure platform, care teams in Iowa will follow a process of family-centered, team-based care coordination to jointly develop Shared Plans of Care (SPoC) with input from families, care coordinators, school personnel, and clinicians. Each SPoC will centralize the child’s health needs, including family and care team goals, and will outline a plan for achieving these goals and strengthening care coordination. “Promoting children’s health requires an approach to services that recognizes the importance of family, school, and community,” said Drew Martinez, MPA, Program Coordinator, Division of Child and Community Health. “Shared care planning will make a real difference in the lives of Iowa’s children with medical complexity and their families.” “Implementing modern care plans requires skilled people, strong processes, and the right tools to help care teams engage families in the process,” said Ted D. Quinn, ACT.md CEO and Co-founder. “Iowa’s care teams are committed to engaging families, and ACT.md is committed to helping them manage these complex tasks while helping families achieve their health goals.” Child Health Specialty Clinics (CHSC), a community-based public health agency that serves Iowa’s CYSHCN, in association with UI Stead Family Children’s Hospital, is the lead partner in this project. CHSC administers the Iowa Maternal and Child Title V program for CYSHCN, ensuring that all Iowa CYSHCN receive services in a comprehensive System of Care. With ACT.md, everyone - clinicians, patients, families, and communities - can act together to make health happen, wherever they are. ACT.md’s Care Coordination Record™ promises a better, safer, less expensive, and more flexible approach to managing healthcare’s complex tasks and achieving your goals. Headquartered in Boston, Mass., ACT.md is privately held and venture-funded by the disruptive innovation investment firm, Rose Park Advisors. For more information, visit http://www.act.md.
News Article | February 24, 2017
The International Association of HealthCare Professionals is pleased to welcome Dianne M. King, MBBS, DCH, DRACOG, FRACGP, DPD, MD, General Practitioner to their prestigious organization with her upcoming publication in The Leading Physicians of the World. Dr. Dianne M. King is a highly trained and qualified skin cancer doctor, family medicine, aesthetic and regenerative medicine physician with an extensive expertise in all facets of her work, especially family medicine, skin cancer, aesthetics, and dermatology. Dr. King has been in practice for 28 years and is currently serving patients within the New Town Skin Cancer & Skin Repair Clinic in New Town, Tasmania, Australia. Furthermore, she is a Managing Partner within New Town Regenerative Medicine Clinic and Family Physician within Stoke St. Family Medical Centre. Dianne M. King’s successful career in medicine began in 1989, when she graduated with her Bachelor of Medicine, Bachelor of Surgery Degree from the University of Tasmania. An advocate for continuing education, she went on to obtain her Diploma in Child Health in 1993 from the Royal College of Physicians of London, and her Diploma in Practical Dermatology in 2001 from the University of Wales. Dr. King then attended the University of Queensland, earning her Master of Medicine Degree in Skin Cancer Medicine in 2011. She holds post graduate qualifications in Dermatology, Skin Cancer Medicine/Surgery, Dermoscopy, Aesthetic Medicine, Paeds, and Obstetrics and Gynecology. In addition to her clinical practice, Dr. King serves as a board member of MelanomaTas, a non profit organization whose primary goals are to contribute to primary prevention models and education, providing support to patients diagnosed with melanoma in Tasmania. To keep up to date with the latest advances and developments in her challenging field, Dr. King maintains professional memberships with Skin Cancer College of Australasia, the American Academy of Aesthetic Medicine, the Australasian Academy of Anti-Aging Medicine, and the Australian Medical Association. She has completed a number of Masterclasses, and serves as a Senior Guest Lecturer on Skin Cancer Medicine for the University of Tasmania School of Medicine. Dr. King attributes her success to her desire to learn and continue education. Learn more about Dr. King here: http://www.newtownskin.com.au/ and be sure to read her upcoming publication in The Leading Physicians of the World. FindaTopDoc.com is a hub for all things medicine, featuring detailed descriptions of medical professionals across all areas of expertise, and information on thousands of healthcare topics. Each month, millions of patients use FindaTopDoc to find a doctor nearby and instantly book an appointment online or create a review. FindaTopDoc.com features each doctor’s full professional biography highlighting their achievements, experience, patient reviews and areas of expertise. A leading provider of valuable health information that helps empower patient and doctor alike, FindaTopDoc enables readers to live a happier and healthier life. For more information about FindaTopDoc, visit http://www.findatopdoc.com