The All Wales Genomic Databank v1.0
Research type
Research Database
IRAS ID
329840
Contact name
Rhys Vaughan
Contact email
Research summary
The All Wales Genomics Databank (AWGDB)
REC name
Wales REC 3
REC reference
25/WA/0052
Date of REC Opinion
18 Mar 2025
REC opinion
Favourable Opinion
Data collection arrangements
Genomic testing occurs routinely in the All Wales Medical Genomics Service (AWMGS). It is performed in combination with detailed descriptions of patient symptoms from patient health care records. Currently, there is no mechanism in Wales for researchers to access this rich dataset under routinely received patient consent. AWGDB is the proposed consent model and organisational structure that will facilitate access for researchers to routinely collected NHS genomic data and health data.
Patients’ genomic data and Health Care Records (HCRs) will remain stored by AWMGS within the National Health Service (NHS) on NHS servers, matching all the security requirements for clinical data. No additional genomic/health data will be collected - it shall remain stored in AWMGS until that data is requested as part of an approved research project. Genomic data will then flow from AWMGS to the researcher via the AWGDB.
Summary data like personal identifiers, which allows AWGDB to track patients, will be stored in a secured and password protected database in Wales Gene Park. Some medical information, like a description of symptoms and diagnosis (which allows AWGDB to track what types of data is held), will be stored on Wales Gene Park servers in safe and protected way.
Research programme
Routinely collected NHS data could provide a valuable and powerful resource for researchers seeking to advance health care - being both comprehensive and more representative of the population. AWGDB will allow approved researchers to access and investigate genomic data and other relevant health data collected as part of routine patient care. Sharing data of thousands of patients in this way allows collaborative research into genetics which could increase medical and scientific knowledge about rare genomic variants. This knowledge will be used to improve genetic and genomic testing for everyone. Though is not the specific aim of the AWGDB, there is a chance that researchers accessing the data in the databank might generate clinically relevant information. If this is the case that information will be fed back to the patients’ clinical team, via AWGDB, to action if appropriate. AWGDB would therefore support the research community and patient/public community (both on a broad an individual level).
Research database title
The All Wales Genomics Databank (AWGDB)
Establishment organisation
Wales Gene Park
Establishment organisation address
Cardiff University
Wales Genomic Health Centre
Cardiff Edge Buisness Park, Longwood Drive, Cardiff
CF14 7YU