The BHC Research Database
The BHC Research Database will provide research data from a ‘real-world’ representative sample of older adults with memory problems across a spectrum of diagnoses, eventually in a large number of patients. The analysis of data held on these patients will help in predicting and treating dementia in the future, particularly for identification of early markers associated with subsequent diagnosis of Alzheimer’s disease. The availability of clinical as well as more experimental cognitive and imaging data is unique, and will enable validation and translation of novel cognitive and imaging measures into clinically relevant tools.
The registry of patients consented for re-contact that forms part of the BHC Research Database provides researchers with potential participants for research studies as well as run-in data to reduce screen failure. Importantly, the BHC Research Database will also give memory clinic patients greater access to take part in experimental studies and clinical trials, which may bring direct benefits for these patients.
How to request access to the database?
Researchers can complete the data access request form and specify the required data fields to obtain access to de-identified research data. To be eligible to apply for data researchers must register for a researcher account. Details of how to obtain an account will be available soon.
Requests will be subject to the following steps:
- Responsibility for decisions on access to BHC data is held by the BHC data access committee
- Sharing of data with researchers will be subject to the agreements outlined in the attached BHC data access agreement form
- All data provided to researchers will be de-identified. Data released are at the minimum possible level of detail to minimise risk of re- identification (e.g. year of birth, rather than full date of birth).
To make a request for re-contact about future studies researchers must complete the data access request form and specify the required data fields. Such requests are granted under the following terms:
- The BHC will confirm requesters’ research capacity/bona fides and researchers must register their study online.
- Responsibility for decisions on access to BHC volunteers is held by the BHC data access committee.
- To be considered, studies need to i) have finalised a protocol and gained research ethical approval, ii) have achieved full funding or have proof there will be funding contingent on BHC approval, iii) fall within the remit of the BHC (dementia or brain health), as detailed in the BHC data access request form.
- Potentially suitable participants for studies that apply to the BHC research database will be identified by algorithms within the BHC Research Database using criteria provided in the application.
- When a participant is identified as potentially suitable for a study, an invitation will be distributed to the patient and nominated relative/friend.
BHC Administrator, Oxford Centre for Human Brain Activity, Warneford Hospital, Oxford, OX3 7BJ
01865 618184 (Mon-Fri 8:30-16:30)
By email (for research and administrative enquiries):
If you have an enquiry about your appointment please telephone us.