ClinicalTrials.gov record NCT06151002
PD Frontline (Part of RAPSODI GD) Remote Assessment of People With Parkinson's
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
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴
AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.
An online, one-time study for people with Parkinson Disease using a questionnaire and an at-home saliva kit. Participants are offered genetic sequencing for GBA and LRRK2 and are told their results. The study aims to build an online, trial-ready cohort and identify candidates for gene-targeted studies.
What it is studying. Whether people with Parkinson Disease can be genotyped for GBA1 and LRRK2 using at-home saliva samples to create a cohort of genotyped participants and to identify potential candidates for gene-targeted trials and observational studies.
What the researchers hope to learn. To genotype the GBA1 gene (and test LRRK2) in people with Parkinson Disease using long-read sequencing; to build an online, trial-ready cohort of genotyped participants; and to identify candidates for gene-targeted trials and observational studies.
What this study is about
The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.
PD Frontline (part of RAPSODI GD) is an online study observational study with the goal of bringing People with Parkinson's to the frontline of research by getting them trial ready. To do this, participants are offered genetic sequencing for the GBA and LRRK2 gene with an at-home saliva collection kit.
Eligibility
The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.
Inclusion criteria
- Formal diagnosis of Parkinson Disease
Exclusion criteria
- Confirmation that the individual carries a GBA variant (GBA positive). These individuals will be referred to sister-study, RAPSODI.
- History of Parkinsonism (progressive supranuclear palsy, multiple system atrophy, traumatic, manganese toxicity, postencephalitic, vascular PD; drug induced PD; corticobasal degeneration)
- Individuals with another neurological disorder including: dementia, movement disorders, and motor neurone disease.
- Individuals on drugs known to be associated with parkinsonism, including neuroleptic agents (Amisulpride, Chlorpromazine Hydrochloride, Flupenthixol, Fluphenazine Hydrochloride, Haloperidol, Methotrimeprazine, Levomepromazine, Olanzapine, Oxypertine, Pericyazine, Perphenazine, Pimozide, Pipotiazine, Prochlorperazine, Promazine Hydrochloride, Reserpine, Risperidone, Sulpiride, Thioridazine, Trifluoperazine, Zuclopenthixol acetate, Zotepine), plus Bupropion, , Lithium, Methyldopa, Metoclopramide and Sodium Valproate).
Study description and what participation involves
The study's detailed description, as published on ClinicalTrials.gov.
Detailed description from the registry
PD Frontline is an online one-time questionnaire based study with the purpose of identifying potential candidates for gene targeted trials and observational studies. Once the questionnaire is completed, the participant is sent a saliva collection kit in the post to provide a sample for genetic testing. The genes tested for are GBA1, the most common risk factor gene for Parkinson's, and LRRK2. Once tested, the participant is informed of their results and kept up-to-date with any studies or trials for which they may be eligible.
AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴
AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.
Complete a one-time online questionnaire and, if they proceed, receive a saliva collection kit by post to provide a sample for genetic testing. The saliva sample is tested for GBA1 and LRRK2 variants. Participants are informed of their genetic results and are kept up-to-date about studies or trials for which they may be eligible.
How the study is structured. This is an observational cohort study conducted online. Participants complete a one-time questionnaire, receive a saliva collection kit by post, and return the sample for genetic testing. The study's primary laboratory method is Oxford Nanopore long-read sequencing of the GBA1 gene. Results are reported back to participants and the cohort is maintained over time (primary outcome tracked up to 20 years).
Questions you could ask
These questions are suggestions for a conversation with the study team or your own clinician, not advice.
- The registry lists this study under Parkinson Disease. Does it apply to my diagnosis?
- This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
- The listed sites are in United Kingdom. Is any of them reachable for me, and does the study help with travel?
- Which of the eligibility criteria would need to be checked with tests before I could join?
More on Gaucher disease
Important dates
- Study start
- Feb 15, 2020
- Primary completion
- Feb 14, 2025 (estimated)
- Study completion
- Aug 20, 2040 (estimated)
- Target enrollment
- 4800 participants (estimated)
- Last updated on registry
- Nov 30, 2023
- Data verified
- Oct 10, 2026
Sponsor and research team
The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.
- Lead sponsor
- University College London Hospitals
- Principal investigator
- Anthony Schapira, Professor Anthony Schapira
University College London Hospitals - Collaborators
- Cure Parkinson's
Central study contact
If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.
- Orla Mitchell 📞 020 801 68413 ✉ pdfrontline@ucl.ac.uk
Participating sites (1)
- University College London (UCL)Recruiting
London, NW3 2PF · United Kingdom
- Orla Mitchell · 020 801 68413 · pdfrontline@ucl.ac.uk
- Tony Schapira
Terms used on this page · explanations by MedicalUpdates.ai
- Inclusion Criteria
- The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
- Exclusion Criteria
- The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.
The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.
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