Clinical data in research into degenerative brain disease(version 2)
Research type
Research Database
Full title
Cerebral Function Unit degenerative brain disorders research database
IRAS ID
147588
Contact name
Julie Snowden
Contact email
Research summary
Clinical data in research into degenerative brain disease(version 2)
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
09/h0906/53+5
Date of REC Opinion
12 Jun 2014
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The database will store clinical data pertaining to patients who attend the Cerebral Function Unit specialist clinic for early onset dementias, at Salford Royal NHS Foundation Trust. The data to be stored will include general demographic information such as the patients' age at onset of symptoms and gender and whether there are other family members with similar symptoms. It will include also findings on clinical assessment and patients' clinical diagnosis. Patients will be assigned a unique ID code, which will be stored along with the data. A register of patients who have agreed for information about them to be made available for research will record patients' names together with their ID code. The register, which contains personally identifiable information, will be stored separately from the research database.
Patients will be approached who have been found on clinical assessment to have alterations in their cognition (i.e. memory, language, thinking skills)or behaviour. They will be asked by their clinician if they wish their clinical information to be made available, in anonymised form, for future clinical research. If so, then information will be included on the research database. Patients will also be asked if they would like to be informed about future research projects relevant to their condition and are happy to be contacted. This information will be recorded on the research register.
Sometimes family members and friends ask how they can help in research. If they wish to become involved then they too may have their names included on the research register as prospective healthy volunteers for future research studies.
Research programme
The Cerebral Function Unit research group at Salford Royal NHS Foundation Trust has a long-standing research interest in improving clinical recognition and understanding of different forms of dementia. The aim of the research database is to facilitate research into the dementias, in particular those forms of dementia that affect younger people. The capability of linking clinical data with findings from the laboratory, such as changes in specific genes, may help to improve early diagnosis and to identify people most at risk. It may ultimately help understanding of why certain people develop particular conditions, leading to better treatment and management.
Research database title
Clinical data in research into degenerative brain disease(version 2)
Establishment organisation
Salford Royal NHS Foundation Trust
Establishment organisation address
Stott Lane
Salford
M6 8HD