Worldwide Online Survey Aims to Identify a New Comprehensive Approach to Global Collaboration for Parkinson’s Disease

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A worldwide online survey identifying genetic Parkinson’s disease (PD) patients demonstrates an overall need for global collaboration and new comprehensive approaches for PD, according to research released today at the International Congress of Parkinson’s Disease and Movement Disorders®.

International Congress of Parkinson's Disease and Movement Disorders®

It is becoming increasingly clear that even relatively common diseases like PD are highly etiologically heterogeneous syndromes and that progress towards early diagnosis and causative treatments will depend on the identification of sufficient numbers of well-defined subgroups.

A worldwide online survey identifying genetic Parkinson’s disease (PD) patients demonstrates an overall need for global collaboration and new comprehensive approaches for PD, according to research released today at the International Congress of Parkinson’s Disease and Movement Disorders®.

The systematic online survey, developed by members of the Michael J. Fox Foundation Global Genetic Parkinson’s Study Group, collected demographic, clinical and genetic data from PD patients with specific genetic mutations. Using authors from articles represented in the MDSGene database as well as the GEoPD consortium, 336 researchers were identified worldwide to participate in the survey, of which 162 (48%) responded. Overall, 103 international sites in 43 countries reported 8,453 PD patients of more than 9 ethnicities with the genetic mutations. This is particularly significant given that the survey identified a three-fold higher number of patients with genetic PD when compared to the cases reported in the literature, indicating access to patients and data requires new approaches and means of communication.

Thomas Gasser, Director at the Department of Neurodegeneration at Hertie Institute for Clinical Brain Research, in Tuebingen, Germany, states “This initiative is of high relevance because it is becoming increasingly clear that even relatively common diseases like PD are highly etiologically heterogeneous syndromes and that progress towards early diagnosis and causative treatments will depend on the identification of sufficient numbers of well-defined subgroups. This will only be possible by collaborations at a very large, preferably worldwide scale.”

Gasser adds, “Of course, this survey is only a very first small step. If international team science is to become successful, many problems concerning standardization of patient ascertainment, data privacy and protection as well as data access and use need to be solved. Nevertheless, the survey raises awareness of these issues and it clearly shows that the PD research community is ready to begin to tackle these important issues.”

About the International Congress of Parkinson's Disease and Movement Disorders®: Meeting attendees gather to learn the latest research findings and state-of-the-art treatment options in Movement Disorders, including Parkinson's disease. Over 5,100 physicians and medical professionals from more than 95 countries will be in attendance to view 2, 200 scientific abstracts submitted by clinicians from around the world.

About the International Parkinson and Movement Disorder Society:
The International Parkinson and Movement Disorder Society (MDS), an international society of over 8,500 clinicians, scientists, and other healthcare professionals, is dedicated to improving patient care through education and research. For more information about MDS, visit http://www.movementdisorders.org.

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Elizabeth Clausen
@movedisorder
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