Collaboration with the OPDC
OPDC BIOSAMPLE AND DATA ACCESS COMMITTEE STATEMENT
17th March 2023
Since commencing in 2010, we have successfully approved over 50 applications for biosamples and linked anonymised clinical data to worldwide collaborators. We have not asked for any fees in relation to support this work, for example administrative time which is significant. The current OPDC Discovery Cohort funding from Parkinson’s UK supports a full-time statistician, whose main role is to model progression in manifest PD. This statistician has been supporting OPDC data access requests, and spending an estimated 25-75% of their working month on Data-access related tasks. Therefore, we have made the decision, supported by the Parkinson’s UK cohort lead, Dr David Dexter, and OPDC PI Prof Richard Wade-Martins to temporarily suspend the formal OPDC Biosample and Data access request process.
However, in the next 12 months, we will be migrating our Discovery cohort Biosamples and linked anonymised clinical information to the Governance and oversight of the Oxford Brain Bank (OBB), led by Professor Laura Parkkinen at NDCN Oxford University. Once this process has been completed, we will be able to resume a process of collaboration and sharing of anonymised clinical information and linked biosamples with collaborators, however access to data and biosamples will require panel approval under a separate process led by OBB, who will also be charging a fee for data access +/- biosample access, which will be appropriate for the level of complexity and administration support required to facilitate the collaborative research.
Please contact me direct if you have any further queries on this process.
Professor Michele Hu, OPDC Discovery Lead (email firstname.lastname@example.org).