Lab Assay for seven genetic varian… for Parkinson's (NCT04994015)
Collect genes to guide care
- Trial ID
- NCT04994015
- Official Title
- Parkinson's Foundation PD GENEration Genetic Registry
- Goal
- Collect genes to guide care
- Status
- RECRUITING
- Sponsor
- Parkinson's Foundation
- Study Type
- OBSERVATIONAL
- Enrollment
- 25000 participants
- Conditions
- Parkinson's Disease
- Interventions
- Lab Assay for seven genetic variants for Parkinson's Disease
Summary For Families
The goal is to build a central resource of genetic information and leftover DNA from people with Parkinson's so researchers can use that data for future studies. People who join will have clinical genetic testing for seven Parkinson's-linked genes, including GBA and LRRK2 and five others, and can choose to be told their results while their test data and any leftover DNA are stored in the repository. The study is open to adults 18 and older who have a probable Parkinson's diagnosis, can give informed consent, and are willing to do the testing and surveys; some family members may be invited, while people with certain other movement disorders, recent blood transfusions, or active blood cancers are not eligible.
Locations
- University of Alabama Birmingham, Birmingham, Alabama, United States
- MD First Research, Chandler, Arizona, United States
- Barrow Neurological Institute, Phoenix, Arizona, United States
- University of Arkansas, Fayetteville, Arkansas, United States
- University of California San Diego (UCSD), La Jolla, California, United States
- University of California Los Angeles, Los Angeles, California, United States
- University of California San Francisco (UCSF), San Francisco, California, United States
- University of Colorado Anschutz, Aurora, Colorado, United States
- Hartford Healthcare, Hartford, Connecticut, United States
- Aventura Neurology - Visionary Investigators Network, Aventura, Florida, United States
- Parkinson's Disease & Movement Disorder Center of Boca Raton, Boca Raton, Florida, United States
- University of Florida, Gainesville, Florida, United States
- University of Miami, Miami, Florida, United States
- Cleveland Clinic Weston, Weston, Florida, United States
- Morehouse College, Atlanta, Georgia, United States
- The Queen's Health System, Honolulu, Hawaii, United States
- University of Illinois-Chicago, Chicago, Illinois, United States
- Rush University, Chicago, Illinois, United States
- University of Chicago, Chicago, Illinois, United States
- Northwestern University, Evanston, Illinois, United States
And 36 more locations.
Frequently Asked Questions
- What is this trial testing?
- This trial is studying Lab Assay for seven genetic variants for Parkinson's Disease. The goal is to build a central resource of genetic information and leftover DNA from people with Parkinson's so researchers can use that data for future studies. People who join will have clinical genetic testing for seven Parkinson's-linked genes, including GBA and LRRK2 and five others, and can choose to be told their results while their test data and any leftover DNA are stored in the repository. The study is open to adults 18 and older who have a probable Parkinson's diagnosis, can give informed consent, and are willing to do the testing and surveys; some family members may be invited, while people with certain other movement disorders, recent blood transfusions, or active blood cancers are not eligible.
- Who can participate?
- Participants must be at least 18 Years.
- Where is this trial located?
- This trial is recruiting at 56 locations.
- Does it cost anything to join?
- You are never charged a fee to join a legitimate clinical trial, and the study treatment and study-specific tests are provided by the trial sponsor at no charge. In the US, routine care you would receive anyway can still be billed to you or your insurance; coverage rules differ by country, and trials in the UK and Canada usually run through public health systems. Travel, parking, and time are real costs, and some trials reimburse them while others do not. Before enrolling, ask the study coordinator to explain in writing what is and is not covered.
- How long does the trial last?
- This trial is estimated to last approximately 5 years and 6 months.
- Can I leave the trial if I change my mind?
- Yes. You can withdraw from any clinical trial at any time, for any reason, without affecting your standard medical care. Trials are voluntary by law. The team may ask if you are willing to do a brief exit visit so they can collect safety information, but you are not obligated.
- Can my spouse or care partner come with me to visits?
- In most cases yes, and it is often encouraged. Care partners can help with notes, questions, and getting home safely after a long visit. Some study assessments do need to happen one on one, but care partners are usually welcome for the rest of the appointment.
- Will I get a placebo in this trial?
- This is an observational study, so there is no placebo and no experimental treatment is assigned. Researchers observe and collect information while you continue your usual care.