Access-PD: A Next Generation Registry in Parkinson's Disease
Research type
Research Tissue Bank
IRAS ID
312555
Contact name
Matthew Wilson
Contact email
Research summary
Access-PD: A Next Generation Registry in Parkinson's Disease
REC name
East Midlands - Derby Research Ethics Committee
REC reference
22/EM/0053
Date of REC Opinion
27 May 2022
REC opinion
Further Information Favourable Opinion
Data collection arrangements
DNA samples will be captured using home testing kits sent to consenting participants.
These samples will be stored at the Queen Mary's University of London biorepository where they will be made available to researchers in line with the Access-PD protocol.Research programme
Access-PD is a national registry built in collaboration with researchers at Queen Mary’s University of London that uses a technology platform to rapidly recruit, consent and follow up large numbers of patients with Parkinson's Disease (PD) without burdening participating practices. This ‘Next Generation Registry’ will allow the PD research community to efficiently find highly targeted groups of patients for clinical trials as well as capture additional observational data from participants via nested projects. These nested projects allow researchers to compliantly reach beyond the de-identified data to contact specific groups within the registries in near real-time for additional data collection without needing to run standalone studies from scratch. In turn, this allows researchers to ask questions that would otherwise be cost or time prohibitive but are critical to optimising care for patients. Access-PD can be used by academic and industry researchers across the lifecycle of therapies from drug discovery through to post-approval where it can be used to address evidence gaps around unmet need, standards of care and real-world safety & effectiveness.
Storage license
12004
RTBTitle
Access-PD: A Next Generation Registry in Parkinson's Disease
Establishment organisation
Cohort Science Ltd
Establishment organisation address
8 Warner Yard
EC1R 5EY