Help slow Parkinson disease progression

Trial ID
NCT04888364
Official Title
Cohort of the French Clinical Research Network for Parkinson's Disease (NS-PARK Cohort)
Goal
Help slow Parkinson disease progression
Status
RECRUITING
Sponsor
Institut National de la Santé Et de la Recherche Médicale, France
Study Type
OBSERVATIONAL
Enrollment
30000 participants
Conditions
Parkinson Disease

Summary For Families

Goal: Gather long-term clinical, genetic, imaging, and biological data across France to better understand how Parkinson's and related parkinsonian disorders begin, progress, and vary between people, and to identify early risk markers. Approach: People join an observational cohort with regular clinical exams and optional biosamples like blood and skin biopsy plus imaging when available, so researchers can link symptoms to biological and genetic clues; no experimental drug is given and usual treatments such as levodopa are continued as needed. Eligibility: Open to anyone age 10 and up who is covered by French social security and who has Parkinson's, another parkinsonian syndrome, or is at increased risk (for example a relative of a patient, a known PD gene carrier, or someone with idiopathic REM sleep behavior disorder), provided they can give informed consent and are not under legal protection.

Locations

  • Centre 01 Paris, Paris, France

Frequently Asked Questions

What is this trial testing?
This trial is studying an experimental treatment. Goal: Gather long-term clinical, genetic, imaging, and biological data across France to better understand how Parkinson's and related parkinsonian disorders begin, progress, and vary between people, and to identify early risk markers. Approach: People join an observational cohort with regular clinical exams and optional biosamples like blood and skin biopsy plus imaging when available, so researchers can link symptoms to biological and genetic clues; no experimental drug is given and usual treatments such as levodopa are continued as needed. Eligibility: Open to anyone age 10 and up who is covered by French social security and who has Parkinson's, another parkinsonian syndrome, or is at increased risk (for example a relative of a patient, a known PD gene carrier, or someone with idiopathic REM sleep behavior disorder), provided they can give informed consent and are not under legal protection.
Who can participate?
Participants must be at least 10 Years.
Where is this trial located?
This trial is recruiting at 1 location.
Does it cost anything to join?
No. There is no cost to participate. Study-related care and treatment are provided at no charge.
How long does the trial last?
This trial is estimated to last approximately 7 years.
Will I get the real drug or a placebo?
It depends on the trial design. Some Parkinson's trials are placebo controlled, meaning a portion of participants get an inactive comparison while others get the experimental treatment. Some use crossover designs so everyone eventually receives the active treatment at some point. Observational trials do not use a placebo at all because they are not testing a new treatment. The consent form for any specific trial spells out the design and your odds of being assigned to placebo before you enroll.
How often will I need to visit the study site?
Visit frequency varies by trial. Many Parkinson's studies require an in person visit every 4 to 12 weeks during the active treatment phase, with shorter or longer gaps depending on the design. The site coordinator can give you the full visit schedule before you sign anything, so you know what the time commitment looks like.
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.
Will travel or parking be reimbursed?
Many trials reimburse for parking, mileage, and sometimes lodging if the site is far from your home. Reimbursement policies vary by sponsor and site. When you contact the trial team, ask specifically what is covered and how reimbursement is processed.
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.

Related Reading

View on ClinicalTrials.gov