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News Article | October 26, 2016
Site: www.eurekalert.org

You probably know someone who has it. It is the most common movement disorder, yet most people don't even know its name. Essential tremor affects nearly one per cent of the world's population, increasing to four per cent of those over 40. The involuntary shaking of hands is the most common symptom, but symptoms can also include shaking of the head and legs. Often misdiagnosed as Parkinson's disease, essential tremor has less severe health impacts, but does get worse over time and can have debilitating consequences. Essential tremor has a large genetic component; it is common to have large families with several members affected. Until recently, however, the genetic mechanism behind the disease remained unknown. Researchers at the Montreal Neurological Institute and Hospital of McGill University and Kiel University in Germany have led a large international collaborative study that sheds new light on the genetics behind essential tremor, in a paper published in Brain Journal on Oct. 21, 2016. It is the largest study on essential tremor to date. Studying a group of 2,809 patients, the researchers found a strong correlation between essential tremor and a gene known as STK32B. They also found two other genes correlated to a lesser extent with the disease. Now they plan to test even more patients to understand how these genes may contribute to the development of the disease and find other predisposing genes. "We have the first clue now, but we want to expand on that because we still have much to learn" says Simon Girard, now a professor at the Université du Quebec à Chicoutimi and the paper's lead author. Ideally to follow up this study the team needs to recruit 10,000 additional essential tremor sufferers. These new subjects would be studied to identify new genes that predispose individuals to essential tremor. Once there is a more complete understanding of the genetic basis of essential tremor, scientists will be in a position to better understand the roles these genes play in the disease, and devise better diagnostic tools and treatments. Girard says recruiting the large number of patients needed will be a challenge, in part because many sufferers do not seek medical care. "Essential tremor is the most common movement disorder, but many sufferers don't seek medical help," he says. "People suffer from the tremor, but they tend to make do as best they can. Some people have had a tremor for 10-20 years or more. They know they have a tremor and they live with it." Anyone who would like to participate in the study should contact research coordinator Vessela Zaharieva at vessela.zaharieva@mcgill.ca. If they are found to be eligible, they will be contacted via telephone to answer more questions and invited to participate in the study if they wish. "People suffering from essential tremor have a chance to help us better understand this complex disease," says Guy Rouleau, director of the MNI and the study's senior author. "The findings will improve the chances of developing drugs to lessen or halt the symptoms, a benefit not only to today's sufferers but those of the future." This study was made possible with funds from Canadian Institutes for Health Research, Canada Research Chair in Genetics of the Nervous System, and Deutsche Forschungsgemeinschaft. The Montreal Neurological Institute and Hospital - The Neuro - is a world-leading destination for brain research and advanced patient care. Since its founding in 1934 by renowned neurosurgeon Dr. Wilder Penfield, The Neuro has grown to be the largest specialized neuroscience research and clinical center in Canada, and one of the largest in the world. The seamless integration of research, patient care, and training of the world's top minds make The Neuro uniquely positioned to have a significant impact on the understanding and treatment of nervous system disorders. The Montreal Neurological Institute is a McGill University research and teaching institute. The Montreal Neurological Hospital is part of the Neuroscience Mission of the McGill University Health Centre.


NEWTOWN, PENNSYLVANIA--(Marketwired - Feb. 9, 2017) - Helius Medical Technologies, Inc. (TSX:HSM)(TSX:HSM.S)(OTCQB:HSDT) ("Helius") is pleased to announce that the clinical results from its Multiple Sclerosis (MS)-Pilot Study, performed at the Montreal Neurological Institute, were published in the peer reviewed journal Multiple Sclerosis Journal: Experimental, Translational and Clinical, January-March 2017:p1-9. The publication, "Non-invasive tongue stimulation combined with intense cognitive and physical rehabilitation induces neuroplastic changes in patients with multiple sclerosis: a multimodal neuroimaging study," can be accessed online at http://journals.sagepub.com/doi/pdf/10.1177/2055217317690561. "We would like to thank Drs. Leonard, Ptito and their team at the Montreal Neurological Institute for their work on this important study and congratulate them on this peer reviewed publication," said Dr. Jonathan Sackier, Helius' Chief Medical Officer. "Understanding the additional, positive effects we are seeing with the investigational PoNS™ therapy compared to physiotherapy alone, is core to our clinical development. This publication should prove insightful to two key care givers, the physician and the therapist." The Portable Neuromodulation Stimulator (PoNS™) is an investigational non-invasive device designed to deliver neurostimulation through the tongue. PoNS™ Therapy combines the use of the device with physical therapy and is currently being evaluated in a multicenter clinical trial for the treatment of balance disorder for subjects with mild to moderate Traumatic Brain Injury. Helius Medical Technologies is a medical technology company focused on neurological wellness. Helius seeks to develop, license and acquire unique and non-invasive platform technologies that amplify the brain's ability to heal itself. Helius intends to file for FDA clearance for the PoNS™ device. For more information, please visit www.heliusmedical.com. The Montreal Neurological Institute and Hospital - ("The Neuro") is a world-leading destination for brain research and advanced patient care. Since its founding in 1934 by renowned neurosurgeon Dr. Wilder Penfield, The Neuro has grown to be the largest specialized neuroscience research and clinical center in Canada, and one of the largest in the world. The seamless integration of research, patient care, and training of the world's top minds make The Neuro uniquely positioned to have a significant impact on the understanding and treatment of nervous system disorders. The Montreal Neurological Institute is a McGill University research and teaching institute. The Montreal Neurological Hospital is part of the Neuroscience Mission of the McGill University Health Centre. The Toronto Securities Exchange has not reviewed and does not accept responsibility for the adequacy or accuracy of the content of this news release. Certain statements in this news release are not based on historical facts and constitute forward-looking statements or forward-looking information within the meaning of the U.S. Private Securities Litigation Reform Act of 1995 and Canadian securities laws ("forward-looking statements"). All statements other than statements of historical fact included in this news release are forward-looking statements that involve risks and uncertainties. Such forward-looking statements include, among others, statements regarding ongoing or planned clinical research, expected future development timelines, regulatory approvals, business initiatives and objectives and use of proceeds from financings or other business initiatives. Forward-looking statements are often identified by terms such as "will", "may", "should", "anticipate", "expects" and similar expressions. There can be no assurance that such statements will prove to be accurate and actual results and future events could differ materially from those anticipated in such statements. Important factors that could cause actual results to differ materially from the Company's expectations include the failure of the Company to achieve its business objectives and other risks detailed from time to time in the filings made by the Company with securities regulators. The reader is cautioned that assumptions used in the preparation of any forward-looking statements may prove to be incorrect. Events or circumstances may cause actual results to differ materially from those predicted, as a result of numerous known and unknown risks, uncertainties, and other factors, many of which are beyond the control of the Company. The reader is cautioned not to place undue reliance on any forward-looking statement. Such information, although considered reasonable by management at the time of preparation, may prove to be incorrect and actual results may differ materially from those anticipated. Forward-looking statements contained in this news release are expressly qualified by this cautionary statement. Risks and uncertainties about the Company's business are more fully discussed in the Company's disclosure materials, including the short form prospectus filed in connection with the Offering, its Annual Report on Form 10-K filed with the United States Securities and Exchange Commission and the Canadian securities regulators and which can be obtained from either at www.sec.gov or www.sedar.com. The forward-looking statements contained in this news release are made as of the date of this news release and the Company assumes no obligation to update any forward-looking statement or to update the reasons why actual results could differ from such statements except to the extent required by law.


News Article | November 1, 2016
Site: www.eurekalert.org

October 31, 2016--New research at Columbia University's Mailman School of Public Health reveals that foods like fruits and vegetables that are high in antioxidant nutrients and carotenoids are associated with better function in amyotrophic lateral sclerosis (ALS) patients around the time of diagnosis. This is among the first studies to evaluate diet in association with ALS function and the first to show that healthy nutrients and antioxidants are associated with better ALS functioning. The findings are published online in JAMA Neurology. ALS, also known as Lou Gehrig's Disease, is a severe neurodegenerative disorder that causes atrophy, paralysis, and eventually respiratory failure. Median survival for ALS patients ranges from 20 to 48 months, although 10 percent to 20 percent of patients can live longer than 10 years. Jeri W. Nieves, PhD, associate professor of Epidemiology, and co-authors examined the links between nutritional intake and severity of ALS for patients who had ALS symptoms for 18 months or less. The study, which relied on nutrient intake reported using a food questionnaire, followed 302 participants recruited at 16 clinical centers throughout the U.S. The researchers used a validated measure of ALS severity and respiratory function. "It appears that nutrition plays a role both in triggering the disease and why it progresses," said Dr. Nieves. "For this reason, ALS patients should eat foods high in antioxidants and carotenes, as well as high fiber grains, fish, and poultry." The researchers also found that milk and lunch meats were associated with lower measures of function, or more severe disease. Two different statistical analyses by Dr. Nieves both indicate that diet may help minimize the severity of ALS and point to the role of oxidative stress in ALS severity. "The foods and nutrients that may help reduce the severity of ALS are very similar to the recommendation to prevent many other chronic diseases," noted Dr. Nieves. "Our cross-sectional study relied on a food questionnaire and those may not always represent a true daily diet," cautioned Dr. Nieves. "However, those responsible for nutritional care of the patient with ALS should consider promoting fruits and vegetables since they are high in antioxidants and carotenes. Future studies will look at follow-up-data on both dietary intake and progression of ALS." Co-authors are Pam Factor-Litvak of Columbia University's Mailman School of Public Health; Jonathan Hupf, Jessica Singleton, Valerie Sharf, and Hiroshi Mitsumoto, all of the Department of Neurology, Columbia University; Chris Gennings, Icahn School of Medicine at Mount Sinai; Bjorn Oskarsson, University of California-Davis, Sacramento; Fernandes Filho, University of Nebraska Medical Center; Eric J. Sorenson, Mayo Clinic; Emanuele D'Amico, Neurological Institute, Catania, Italy; and Ray Goetz, Department of Psychiatry, New York State Psychiatric Institute. The study was supported by the National Institute of Environmental Health Sciences, National Institutes of Health (Grant R01ES016348). The paper has additional funding sources and also non-conflict of interest statements. Founded in 1922, Columbia University's Mailman School of Public Health pursues an agenda of research, education, and service to address the critical and complex public health issues affecting New Yorkers, the nation and the world. The Mailman School is the third largest recipient of NIH grants among schools of public health. Its over 450 multi-disciplinary faculty members work in more than 100 countries around the world, addressing such issues as preventing infectious and chronic diseases, environmental health, maternal and child health, health policy, climate change & health, and public health preparedness. It is a leader in public health education with over 1,300 graduate students from more than 40 nations pursuing a variety of master's and doctoral degree programs. The Mailman School is also home to numerous world-renowned research centers including ICAP (formerly the International Center for AIDS Care and Treatment Programs) and the Center for Infection and Immunity. For more information, please visit http://www. .


News Article | October 31, 2016
Site: www.eurekalert.org

Scientists have identified a gene in the French-Canadian population that predisposes them to the development of intracranial aneurysm (IA), a potentially life threatening neurological condition that is responsible for approximately 500,000 deaths worldwide per year, half of which occur in people less than 50 years of age. Using genetic analysis, the team of researchers found rare variations of one gene, RNF213, that appeared more frequently in IA patients than in the control group. Both patients and the control group came from French-Canadian families. Their study was published in the American Journal of Human Genetics on Oct. 13. Scientists already knew that IA is inheritable, and a 1996 study found that 29.8 per cent of French-Canadian IA patients had a family member who also had IA, a higher percentage than the general population. This suggests the genetic link to IA in French-Canadians is stronger than average. The gene or genes responsible for this increased inheritability, however, remained a mystery. The team of researchers, including 13 from the Montreal Neurological Institute and Hospital, used exome sequencing to identify RNF213 as suspicious in a patient group of 26 people from six families who experienced IA. They then re-sequenced RNF213 in a larger control group of 189 people, and found 14 variants of the gene, unique to the French-Canadian patient group, at least two of which have functions that could increase risk of IA. Intracranial aneurysm is a dilation or ballooning of a blood vessel in the brain caused by a weakness in the arterial wall. The RNF213 variants may play a role in the development of weak arterial walls by affecting the delivery of energy in these cells. Ten per cent of the patient group had at least one of the rare and potentially damaging RNF213 variations, a higher percentage than the control group by a statistically significant margin. This suggests that while RNF213 is not the only factor playing a role in IA, it does increase the risk. Interestingly, RNF213 has also been found to be associated with moya moya disease (MMD), a condition where blood vessels in the brain are constricted, leading to the formation of abnormal vessels to compensate for the blockage. MMD is almost exclusively found in the East Asian population. This study and the prior association of RNF213 to MMD supports the theory that the gene plays a role in blood vessel development, but links to different cerebrovascular diseases in different populations. The worldwide prevalence of IA is one-to-three percent, and this condition entails severe consequences, particularly when the aneurysm bursts, which is known as a subarachnoid hemorrhage. When this occurs, 30 to 45 per cent of patients die within 30 days. While other health factors like smoking and hypertension are known to increase risk, researchers continue to search for genes that predispose people to IA. "By identifying RNF213 as gene associated with intracranial aneurysm, we help provide a better understanding of its genetic origins," says Sirui Zhou, a PhD candidate at the Montreal Neurological Institute and the University of Montreal. "Now researchers can focus on discovering the mechanism through which RNF213 affects the development of blood vessels." This research was funded by the Canadian Institutes of Health Research and The Canadian Heart and Stroke Foundation. The Montreal Neurological Institute and Hospital - The Neuro - is a world-leading destination for brain research and advanced patient care. Since its founding in 1934 by renowned neurosurgeon Dr. Wilder Penfield, The Neuro has grown to be the largest specialized neuroscience research and clinical center in Canada, and one of the largest in the world. The seamless integration of research, patient care, and training of the world's top minds make The Neuro uniquely positioned to have a significant impact on the understanding and treatment of nervous system disorders. The Montreal Neurological Institute is a McGill University research and teaching institute. The Montreal Neurological Hospital is part of the Neuroscience Mission of the McGill University Health Centre. For more information, please visit http://www.


News Article | December 2, 2016
Site: globenewswire.com

SOUTH SAN FRANCISCO, Calif., Dec. 02, 2016 (GLOBE NEWSWIRE) -- Cytokinetics, Inc. (Nasdaq:CYTK) today announced one oral presentation and two poster presentations at the 27th International Symposium on ALS/MND in Dublin, Ireland. The posters will be presented on Wednesday, December 7, 2016, and will include the results of an international physician survey on the use of noninvasive ventilation in the treatment of ALS, and data on a machine learning model for the prediction of slow vital capacity, based on datasets from BENEFIT-ALS that Origent Data Sciences analyzed under a research collaboration with Cytokinetics that is funded by The ALS Association. On Friday, December 9, 2016, the baseline characteristics of patients enrolled in VITALITY-ALS will be presented in an oral presentation. Date: Wednesday, December 7, 2016 Location: The Forum, The Convention Centre Dublin Session: Poster Session A Presentation Time: 5:45 – 7:30 PM Poster Moderated: 6:00 – 6:20 PM Poster Number: P203 Theme: 7 - Improving Diagnosis and Prognosis Title: Machine Learning Model For The Prediction Of Slow Vital Capacity Poster Presenters: David L. Ennist, Ph.D., MBA, Chief Science Officer, Origent Data Sciences and Jinsy A. Andrews, M.D., Director of Neuromuscular Clinical Trials at Columbia University in New York City Date: Wednesday, December 7, 2016 Location: The Forum, The Convention Centre Dublin Session: Poster Session A Presentation Time: 5:45 – 7:30 PM Poster Moderated: 7:00 – 7:20 PM Poster Number: CW3 Theme: CW - Clinical Work in Progress Title: Understanding the use of noninvasive ventilation in the treatment of amyotrophic lateral sclerosis: results of an international physician survey Poster Presenter: Terry Heiman-Patterson, M.D., Drexel Neurological Institute, Philadelphia Date: Friday, December 9, 2016 Location: The Liffey B, The Convention Centre Dublin Session: 9B – Clinical Trials Presentation Time:  9:30 – 9:45 AM   Title: VITALITY-ALS, a Phase 3 trial of the fast skeletal muscle troponin activator, Tirasemtiv, for the potential treatment of ALS: Study design and baseline characteristics Presenter: Jeremy M. Shefner, M.D., Ph.D., Lead Investigator of VITALITY-ALS, Professor and Chair of Neurology at Barrow Neurological Institute, and Professor and Executive Chair of Neurology at the University of Arizona, Phoenix Cytokinetics is a late-stage biopharmaceutical company focused on discovering, developing and commercializing first-in-class muscle activators as potential treatments for debilitating diseases in which muscle performance is compromised and/or declining. As a leader in muscle biology and the mechanics of muscle performance, the company is developing small molecule drug candidates specifically engineered to increase muscle function and contractility. Cytokinetics’ lead drug candidate is tirasemtiv, a fast skeletal muscle troponin activator, for the potential treatment of ALS. Tirasemtiv has been granted orphan drug designation and fast track status by the U.S. Food and Drug Administration and orphan medicinal product designation by the European Medicines Agency for the potential treatment of ALS. Cytokinetics retains the right to develop and commercialize tirasemtiv, subject to an option held by Astellas Pharma Inc. Cytokinetics is also collaborating with Astellas to develop CK-2127107, a fast skeletal muscle activator, for the potential treatment of spinal muscular atrophy, chronic obstructive pulmonary disease and ALS. Cytokinetics is collaborating with Amgen Inc. to develop omecamtiv mecarbil, a novel cardiac muscle activator, for the potential treatment of heart failure. Amgen holds an exclusive license worldwide to develop and commercialize omecamtiv mecarbil and Astellas holds an exclusive license worldwide to develop and commercialize CK-2127107. Both licenses are subject to Cytokinetics' specified development and commercialization participation rights. For additional information about Cytokinetics, visit http://www.cytokinetics.com/. This press release contains forward-looking statements for purposes of the Private Securities Litigation Reform Act of 1995 (the "Act"). Cytokinetics disclaims any intent or obligation to update these forward-looking statements, and claims the protection of the Act's Safe Harbor for forward-looking statements. Examples of such statements include, but are not limited to, statements relating to Cytokinetics’ and its partners’ research and development activities, including the conduct, design, enrollment, progress and timing of results of the VITALITY-ALS Phase 3 clinical trial of tirasemtiv in patients with ALS; the significance and utility of preclinical study and clinical trial results; and the properties and potential efficacy and safety profile of tirasemtiv and Cytokinetics' other drug candidates. Such statements are based on management's current expectations, but actual results may differ materially due to various risks and uncertainties, including, but not limited to, further clinical development of tirasemtiv in ALS patients will require significant additional funding, and Cytokinetics  may be unable to obtain such additional funding on acceptable terms, if at all; the FDA and/or other regulatory authorities may not accept effects on slow vital capacity as a clinical endpoint to support registration of tirasemtiv for the treatment of ALS; potential difficulties or delays in the development, testing, regulatory approvals for trial commencement, progression or product sale or manufacturing, or production of Cytokinetics' drug candidates that could slow or prevent clinical development or product approval, including risks that current and past results of clinical trials or preclinical studies may not be indicative of future clinical trial results, patient enrollment for or conduct of clinical trials may be difficult or delayed, Cytokinetics' drug candidates may have adverse side effects or inadequate therapeutic efficacy, the FDA or foreign regulatory agencies may delay or limit Cytokinetics' or its partners' ability to conduct clinical trials, and Cytokinetics may be unable to obtain or maintain patent or trade secret protection for its intellectual property; Cytokinetics may incur unanticipated research and development and other costs or be unable to obtain additional financing necessary to conduct development of its products; standards of care may change, rendering Cytokinetics' drug candidates obsolete; and competitive products or alternative therapies may be developed by others for the treatment of indications Cytokinetics' drug candidates and potential drug candidates may target; and risks and uncertainties relating to the timing and receipt of payments from its partners, including milestones and royalties on future potential product sales under Cytokinetics' collaboration agreements with such partners. For further information regarding these and other risks related to Cytokinetics' business, investors should consult Cytokinetics' filings with the Securities and Exchange Commission.


News Article | October 28, 2016
Site: www.eurekalert.org

DARIEN, IL - A new study shows that positive airway pressure (PAP) therapy for sleep apnea may have a positive impact on sleep-related functional outcomes among patients who also suffer from hypertension. The findings suggest that untreated sleep apnea may explain the quality of life impairments reported by many patients with high blood pressure. Results show consistent improvement of patient-reported outcomes in response to PAP therapy for sleep apnea in hypertensive patients. The study found significant improvement in daytime sleepiness, depressive symptoms and fatigue severity within a year following treatment initiation. Results were significant even in patients with resistant hypertension. "We found that consistently and notably there was no difference in patient-reported outcomes between resistant hypertension and non-resistant hypertension groups," said lead author Harneet Walia, MD, assistant professor of family medicine in the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University. "What we found was that the improvement in the patient-reported outcomes was more pronounced in those with objective adherence to PAP therapy." Study results are published in the Oct. 15 issue of the Journal of Clinical Sleep Medicine. According to the American Academy of Sleep Medicine, 30 to 40 percent of patients with hypertension also suffer from obstructive sleep apnea, which is a sleep-related breathing disorder characterized by repetitive episodes of complete or partial upper airway obstruction occurring during sleep. Adhering to sleep apnea treatment is a proven means of decreasing blood pressure and improving overall health. The single-center, observational study involved nearly 900 patients with sleep apnea and hypertension, of which 15 percent had resistant hypertension. Their mean age was 58 years, 52 percent were male, and 72 percent were Caucasian. They were being treated with PAP therapy through the Cleveland Clinic Sleep Disorders Center. Questionnaire-based patient reported outcomes were evaluated using the Epworth Sleepiness Scale, Patient Health Questionnaire-9 (depression), and Fatigue Severity Scale. The authors report that to their knowledge no previous study has examined changes in sleep-related functional outcomes with PAP therapy in a cohort comprising patients with hypertension, including some with resistant hypertension. The study was funded by grants from the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH), and by a Scholar Award from the Center for Outcomes Research and Evaluation at the Cleveland Clinic Neurological Institute. To request a copy of the study, "Impact of Sleep-Disordered Breathing Treatment on Patient Reported Outcomes in a Clinic-Based Cohort of Hypertensive Patients," or to arrange an interview with the study author or an AASM spokesperson, please contact Senior Communications Coordinator Amy Pyle at 630-737-9700, ext. 9366, or apyle@aasmnet.org The monthly, peer-reviewed Journal of Clinical Sleep Medicine is the official publication of the American Academy of Sleep Medicine, a professional membership society that improves sleep health and promotes high quality, patient-centered care through advocacy, education, strategic research, and practice standards (http://www. ). More information about sleep, and a searchable directory of AASM-accredited sleep centers, is available at http://www. .


News Article | November 3, 2016
Site: www.prnewswire.com

RALEIGH, N.C., Nov. 2, 2016 /PRNewswire/ -- Raleigh-based Wake Research (Wake Research Associates, LLC) announces a partnership with Western Neurosurgery, Ltd., an affiliated partner of Carondelet Neurological Institute, headquartered in Tucson, Arizona. Tucson Neuroscience Research brings...


Louis E.D.,Columbia University | Louis E.D.,Neurological Institute
Current Neurology and Neuroscience Reports | Year: 2014

For many years, little was written about the underlying biology of ET, despite its high prevalence. Discussions of disease mechanisms were dominated by a focus on tremor physiology. The traditional model of ET, the olivary model, was proposed in the 1970s. The model suffers from several critical problems, and its relevance to ET has been questioned. Recent mechanistic research has focused on the cerebellum. Clinical and neuroimaging studies strongly implicate the importance of this brain region in ET. Recent mechanistic research has been grounded more in tissue-based changes (i.e., postmortem studies of the brain). These studies have collectively and systematically identified a sizable number of changes in the ET cerebellum, and have led to a new model of ET, referred to as the cerebellar degenerative model. Hence, there is a renewed interest in the science behind the biology of ET. How the new understanding of ET will translate into treatment changes is an open question. © 2014 Springer Science+Business Media.


Louis E.D.,Columbia University | Louis E.D.,Neurological Institute
Neuroepidemiology | Year: 2013

Background: Essential tremor (ET) is among the most prevalent neurological diseases. Age of onset, a key variable in neuroepidemiological and genetic research, is chiefly assessed by self-report rather than medical record review; the latter may be of little use. As a researcher, one wonders about the quality of this self-report. Is age of onset something which can be reproducibly self-reported by patients? There are few published data to aid researchers. Methods: Age of onset was self-reported at two time points (baseline and follow-up) in 86 ET cases in a longitudinal epidemiological study in New York. Results: The mean follow-up interval was 5.7 ± 2.5 (maximum = 14) years. Overall, agreement between the baseline and follow-up reports was high (ρ = 0.85, p < 0.001). Yet the difference (age of onset baseline-age of onset follow-up) ranged widely (from-47 to 32 years), and in one fifth of cases was ≥10 years. Greater agreement was associated with several clinical factors including age, medication use, embarrassment, depressive symptoms, cognitive test score and disease duration. Conclusions: Differences in reported age of onset in ET may vary widely, and in up to one fifth of patients may be substantial. Investigators should approach these self-reports with caution. Copyright © 2012 S. Karger AG, Basel.

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