Parkinson's Trial NCT06151002
Identify candidates for gene therapy
- Trial ID
- NCT06151002
- Official Title
- PD Frontline, Part of RAPSODI GD (Remote Assessment of Parkinsonism Supporting Ongoing Development of Interventions in Gaucher's Disease) to Build an Online Trial-ready Cohort of GBA Genotyped People With Parkinson's
- Goal
- Identify candidates for gene therapy
- Status
- RECRUITING
- Sponsor
- University College London Hospitals
- Study Type
- OBSERVATIONAL
- Enrollment
- 4800 participants
- Conditions
- Parkinson Disease
Summary For Families
The team is building an online, trial-ready group of people with Parkinson's whose GBA gene status is known, so future treatments aimed at GBA-related Parkinson's can find the right participants faster. They enroll people with a formal Parkinson's diagnosis and use remote assessments plus genetic testing to determine GBA variants, keeping participants in a registry for quick referral to GBA-focused studies; this is observational, not a treatment. Adults aged 18 to 90 with Parkinson's can join, but anyone already confirmed GBA-positive will be referred to the sister RAPSODI study instead. The study excludes other types of parkinsonism, other neurological disorders, and people taking medications known to cause parkinsonism.
Locations
- University College London (UCL), London, United Kingdom
Frequently Asked Questions
- What is this trial testing?
- This trial is studying an experimental treatment. The team is building an online, trial-ready group of people with Parkinson's whose GBA gene status is known, so future treatments aimed at GBA-related Parkinson's can find the right participants faster. They enroll people with a formal Parkinson's diagnosis and use remote assessments plus genetic testing to determine GBA variants, keeping participants in a registry for quick referral to GBA-focused studies; this is observational, not a treatment. Adults aged 18 to 90 with Parkinson's can join, but anyone already confirmed GBA-positive will be referred to the sister RAPSODI study instead. The study excludes other types of parkinsonism, other neurological disorders, and people taking medications known to cause parkinsonism.
- Who can participate?
- Participants must be between 18 Years and 90 Years.
- Where is this trial located?
- This trial is recruiting at 1 location.
- 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.
- 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.
- What procedures are involved in this trial?
- Based on the protocol, this trial involves: Questionnaires & surveys (non-invasive). Confirm the full schedule with the study coordinator.