The Brain Health Clinic Research Database
Researchers can access two types of data held in the Oxford Brain Health Clinic research database:
1. De-identified research data
The Brain Health Clinic 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 on these patients will help in predicting and treating dementia in the future, particularly for the 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.
Data will include medical history, diagnosis, demographics, cognitive scores, genotyping information and a range of imaging-derived phenotypes based on the MRI scans, such as hippocampal volume and white matter hyperintensity load.
Researchers 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 Brain Health Clinic data is held by the Brain Health Clinic data access committee
- Sharing of data with researchers will be subject to the agreements outlined in the Brain Health Clinic 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).
2. Registry of patients consented for re-contact
The Brain Health Clinic research database also provides researchers with potential participants for research studies as well as run-in data to reduce screen failure. This means memory clinic patients, and their relatives, get greater access to experimental studies and clinical trials, which may directly benefit them.
Researchers must complete the data access request form and specify the required data fields. Such requests are granted under the following terms and subject to the following steps:
- The Brain Health Clinic will confirm requesters’ research capacity/bona fides and researchers must register their study online.
- Responsibility for decisions on access to Brain Health Clinic volunteers is held by the Brain Health Clinic 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 Brain Health Clinic approval, iii) fall within the remit of the Brain Health Clinic (dementia or brain health), as detailed in the Brain Health Clinic data access request form.
- Potentially suitable participants for studies that apply to the Brain Health Clinic research database will be identified by algorithms within the Brain Health Clinic 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.
By email (for research and administrative enquiries):
01865 618184 (Mon-Fri 8:30-16:30)