PROGENI Parkinson's Research: The Organized Genetics Initiative Parkinson's Research: The Organized Genetics Initiative
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PROGENI Family Study
Since 1998, the PROGENI researchers have sought to identify the genes contributing to Parkinson’s disease (PD). This research effort, organized across more than 60 academic universities across North America has led to many important advances in our understanding of the role of genetics in PD. Already, more than 1,650 individuals from families with a history of Parkinson’s disease have participated in this research study.

Potential study participants must either be diagnosed with or have symptoms of PD. They must also have a family history of PD in other relatives.

Study participants who qualify, may be asked to undergo a one time clinical examination at a Parkinson Study Group center near their home. This study visit consists of answering questions about the individual’s experience with PD, including discussion of the symptoms they experience, their response to PD medications, activities of daily living and mood. Family members who do not show symptoms of PD will be asked the same questions so comparisons can be made between persons with PD and those who do not have PD. Participants will be asked to provide information about where they have lived and the work they have done. They will undergo a brief neurological examination by a movement disorder specialist and a small sample of blood will be drawn. All of this will be done at no cost to the subject. A voluntary autopsy program is also available to study participants. Learn more about the importance of autopsy.

Download a brochure with more information about the PROGENI project in English, Spanish or French. These brochures require Acrobat Reader.

Families can learn more about this important research study by contacting the PROGENI study coordinator at 1-888-830-6299 or by email at



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