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Parkinson's Research: The Organized Genetics Initiative (PROGENI)

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ClinicalTrials.gov Identifier: NCT00086073
Recruitment Status : Completed
First Posted : June 24, 2004
Last Update Posted : February 16, 2011
Information provided by:

Study Description
Brief Summary:
The purpose of this trial is to study genetic and other risk factors that may be important in the development of Parkinson's disease.

Condition or disease
Parkinson Disease

Detailed Description:

The The Parkinson's Research: The Organized Genetics Initiative, also known as PROGENI, is a multi-center study involving 2000 people throughout North America who are affected, or possibly affected, with Parkinson's disease (PD). The goal of the initiative is to study the genetic and other risk factors which may be important in the development of PD.

In order to better understand the genetic factors leading to PD, researchers will study families having 2 or more members diagnosed with PD. Using DNA samples from each participant, researchers hope to identify genes that may cause a person to be at higher risk for developing PD.

Each participant in the study will be asked to complete a family history questionnaire, providing information about the history of PD in the family. Participants also will be asked to discuss the symptoms they have experienced and their responses to PD medications. This information will be used by study personnel to determine further eligibility for the study. Those eligible for further participation will be asked to undergo a study visit at the site closest to their residence, during which they will be asked to complete questionnaires regarding PD symptoms, medical history, places of residence, occupations, mood, mental status, and activity level. A blood sample will be drawn for DNA extraction. The study visit will take about 2 hours.

Study Design

Study Type : Observational
Estimated Enrollment : 1800 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Parkinson's Disease Collaborative Study of Genetic Linkage
Study Start Date : August 1998
Study Completion Date : January 2011

Resource links provided by the National Library of Medicine

U.S. FDA Resources

Groups and Cohorts

Outcome Measures

Biospecimen Retention:   Samples With DNA
blood sample

Eligibility Criteria

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
families having 2 or more members diagnosed with PD

Inclusion Criteria:

  • To be eligible to participate in this study participants must be diagnosed with or have symptoms of PD. In addition, they must also have a family history of PD in other relatives.

Exclusion Criteria:

  • Subjects cannot have participated in any other genetic research project for Parkinson's disease.
Contacts and Locations

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00086073

  Show 58 Study Locations
Sponsors and Collaborators
Indiana University School of Medicine
The Parkinson Study Group
Children's Hospital Medical Center, Cincinnati
National Institute of Neurological Disorders and Stroke (NINDS)
Principal Investigator: Tatiana Foroud, Ph.D. Indiana University
More Information

Additional Information:
Responsible Party: Tatiana Foroud, Ph.D, Principal Investigator, Indiana University
ClinicalTrials.gov Identifier: NCT00086073     History of Changes
Other Study ID Numbers: 9703-09
R01NS037167 ( U.S. NIH Grant/Contract )
First Posted: June 24, 2004    Key Record Dates
Last Update Posted: February 16, 2011
Last Verified: November 2010

Keywords provided by Indiana University:
Parkinson disease
Parkinson's disease

Additional relevant MeSH terms:
Parkinson Disease
Parkinsonian Disorders
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Neurodegenerative Diseases