Parkinson DiseasePROGENINCT00086073
Parkinson's Research: The Organized Genetics Initiative
An observational study of Parkinson Disease, run by Indiana University at 58 sites in 3 countries.
Trial 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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Parkinson Disease
- How many people
- 1,800 participants
- Where
- 58 sitesin 3 countries
- Study dates
- Aug 1998to Jan 2011
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: families having 2 or more members diagnosed with PD
Who may be able to join
- 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.
Who cannot join
- Subjects cannot have participated in any other genetic research project for Parkinson's disease.
Trial locations and contacts
58 sites in 3 countries.
58 sites in 3 countries
United States52 sites
Albany Medical College
Albany, New York, 12208
Medical College of Georgia
Augusta, Georgia, 30912
University of Maryland School of Medicine
Baltimore, Maryland, 21201
Johns Hopkins University
Baltimore, Maryland
Parkinson's Disease & Mmvt Disorders Ctr of Boca Raton
Boca Raton, Florida
Brigham & Women's Hospital
Boston, Massachusetts, 02115
Beth Israel Deaconess Medical Center
Boston, Massachusetts, 02215
University of Buffalo
Buffalo, New York
Northwestern University Medical School
Chicago, Illinois, 60611
University of Chicago
Chicago, Illinois, 60637
University of Cincinnati Medical Center
Cincinnati, Ohio, 45267
Cleveland Clinic Foundation
Cleveland, Ohio
Ohio State University
Columbus, Ohio, 43210
UT Southwestern Medical Center
Dallas, Texas, 75390
University of Colorado Health Sciences Center
Denver, Colorado, 80262
Michigan State University
East Lansing, Michigan
Colorado Neurological Institute
Englewood, Colorado, 80113
Evanston Northwestern Healthcare
Evanston, Illinois, 60026
Parkinson's & Movement Disorder Institute
Fountain Valley, California, 92708
Pacific Health Research Institute
Honolulu, Hawaii
Baylor College of Medicine
Houston, Texas, 77030
Indiana University School of Medicine
Indianapolis, Indiana, 46202
University of Iowa
Iowa City, Iowa, 52242
University of California Irvine
Irvine, California, 92612
Mayo Clinic Jacksonville
Jacksonville, Florida, 32224
Kansas University Medical Center
Kansas City, Kansas, 66160
University of Tennessee-Health Sciences Center
Memphis, Tennessee, 38163
Medical College of Wisconsin
Milwaukee, Wisconsin, 53226
University of Minnesota Fairview Univ Med Ctr
Minneapolis, Minnesota, 55406
Institute for Neurodegenerative Disorders
New Haven, Connecticut, 06510
Oschsner Clinic Foundation
New Orleans, Louisiana, 70112
Beth Israel Medical Center
New York, New York, 10003
Mount Sinai Medical Center
New York, New York, 10029
Columbia-Presbyterian Medical Center
New York, New York, 10032
Pacific Neuroscience Medical Group, Inc
Oxnard, California
Barrow Neurological Institute
Phoenix, Arizona, 85013
University of Pittsburg
Pittsburgh, Pennsylvania
Oregon Health & Science University
Portland, Oregon, 97239
University of Rochester Medical Center
Rochester, New York, 14642
University of California San Diego
San Diego, California, 92101
University of California San Francisco
San Francisco, California, 94143
Port City Neurology, Inc
Scarborough, Maine
LSU Health Sciences Center
Shreveport, Louisiana, 71130
Henry Ford Health System
Southfield, Michigan
Southern Illinois Univ School of Medicine
Springfield, Illinois
Washington University
St Louis, Missouri, 63130
University of South Florida
Tampa, Florida, 33620
Medical College of Ohio, ,
Toledo, Ohio, 43614
Neurohealth
Warwick, Rhode Island, 02886
Cleveland Clinic Florida
Weston, Florida, 33331
Cleveland Clinic Florida
Weston, Florida
Wake Forest University School of Medicine
Winston-Salem, North Carolina, 27157
Canada5 sites
University of Alberta
Edmonton, Alberta
London Health Sciences Center
London, Ontario
Hotel-Dieu Hospital-CHUM
Montreal, Quebec
Ottawa Civic Hospital
Ottawa, Ontario
Toronto Western Hospital
Toronto, Ontario
About this study
Official title: Parkinson's Disease Collaborative Study of Genetic Linkage
The purpose of this trial is to study genetic and other risk factors that may be important in the development of Parkinson's disease.
Read the 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.
- Conditions
- Parkinson Disease
- Keywords
- Parkinson disease, Parkinson's disease, PD, genetics, genes, siblings, family
- Medical subject headings
- Parkinson Disease
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted24 Jun 2004 (estimated)
- Study startAug 1998
- Study completionJan 2011
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Parkinson DiseaseStudies of the same condition, open and under way.
- More trials run by Indiana UniversityThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 1,800 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Indiana University
- Sponsor type
- University, hospital or other
- Collaborators
- The Parkinson Study Group, Children's Hospital Medical Center, Cincinnati, National Institute of Neurological Disorders and Stroke (NINDS)
- Investigators
- Tatiana Foroud, Ph.D., Principal investigator, Indiana University
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00086073
- Sponsor's protocol ID
- 9703-09
- Other IDs
- R01NS037167
- Acronym
- PROGENI
- Status last verified
- Nov 2010
- First submitted
- 22 Jun 2004
- Last updated
- 16 Feb 2011
- Results posted
- No
- Data monitoring committee
- No
Study at a glance
From the registry record, last updated by the sponsor on 16 Feb 2011. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Parkinson's Disease Collaborative Study of Genetic Linkage
- ClinicalTrials.gov ID
- NCT00086073
- Acronym / sponsor ID
- PROGENI / 9703-09
- Conditions
- Parkinson Disease
- Keywords
- Parkinson disease, Parkinson's disease, PD, genetics, genes, siblings, family
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 1,800 participants (estimated)
- Lead sponsor
- Indiana UniversityUniversity, hospital or other
- Collaborators
- The Parkinson Study Group, Children's Hospital Medical Center, Cincinnati, National Institute of Neurological Disorders and Stroke (NINDS)
- Study start
- Aug 1998
- Study completion
- Jan 2011 (actual)
- First posted
- 24 Jun 2004 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The purpose of this trial is to study genetic and other risk factors that may be important in the development of Parkinson's 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
- Observational model
- Cohort
- Time perspective
- Prospective
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- families having 2 or more members diagnosed with PD
Key inclusion criteria (1 listed)
- 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.
Key exclusion criteria (1 listed)
- Subjects cannot have participated in any other genetic research project for Parkinson's disease.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Not reported in the source record.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 16 Feb 2011.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Tatiana Foroud, Ph.D. principal investigator
Indiana University
58 sites in 3 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Parkinson Disease, run by Indiana University at 58 sites in 3 countries.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 16 Feb 2011. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 58 sites in United States, Canada, Puerto Rico. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 16 Feb 2011; AzTrials last refreshed its copy on 7 Nov 2026.