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Participant Stories

“I feel like there is hope, great hope, more hope now than ever before.” –Peggy Willocks, Diagnosed 14 years

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Recently Diagnosed with Parkinson's Disease?

If you have recently been diagnosed with Parkinson’s disease (PD) understanding the disease, and learning about the resources available to you, are good first steps.

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The GenePD Study

Official Study Title: The GenePD Study
Sponsor: Boston University Medical Center
Clinicaltrials.gov ID:
Study ID:

Summary

The GenePD study is a study of the genetics of Parkinson's disease,  Parkinson's DiseaseA chronic, slowly progressive disease of the nervous system characterized by the combination of tremor, rigidity, bradykinesia and stooped posture, among other symptoms. and is aimed at trying to identify genes that may affect risk of developing PD. Many studies have been conducted to look at causes and risk factors for Parkinson's disease. Although an exact cause has not been discovered, it has been noted that family history is one of the strongest risk factors for people with Parkinson's disease (PD). About 16% of people with PD have a parent or sibling with PD. Participation in this study includes four parts. First, participants are asked to contribute a blood sample from which DNA will be extracted. Secondly, a neurological examination may be performed or a request for medical records made to confirm the diagnosis of Parkinson's disease. Next, in an in-person or telephone interview, researchers will ask participants to share information about their family and medical history, and about possible environment risk factors that people may encounter. Finally, participants will be asked for permission to contact their relatives regarding participating in the study. This study is looking specifically for families with more than one affected member with Parkinson's disease. This includes brothers and sisters or parents and children diagnosed with Parkinson's disease or any family with multiple members with PD.

Study Phase

Not Applicable
What is a study phase?

Symptoms Addressed: Study does not address symptoms

Study does not address symptoms

Time Commitment

  • Less than one day

Eligibility

  • Gender(s) Accepted: Either
  • Study is enrolling non-PD participants

Inclusion Criteria

  • People from families with more than one member with Parkinson's disease.

Enrollment

Expected Enrollment: 1500 (US)
Date Enrollment Began: Sep 01 1997
Last Updated Date: Jun 13 2006
Trial Post Date: Jun 13 2006
Website: http://www.bu.edu/genepd

Primary Contacts and Locations

Massachusetts

  • Jeanne Latourelle
    Boston University Medical Center
    jlatoure@bu.edu
    Phone: 617-638-5179
    Boston, MA
    USA

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