Clinical data in research into neurodegenerative conditions
Research type
Research Database
IRAS ID
266294
Contact name
Jennifer C Thompson
Contact email
Research summary
Cerebral Function Unit database for research into neurodegenerative conditions
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
19/NE/0219
Date of REC Opinion
20 Sep 2019
REC opinion
Favourable Opinion
Data collection arrangements
Dementia is a huge social problem, with devastating emotional and practical impact on families and a large economic burden for society. Advances in understanding causation depend crucially on the availability of systematic, reliable information about patients' illness. The Cerebral Function Unit at Salford Royal NHS Foundation Trust runs a specialist clinic for early onset dementia. Demographic information such as age at onset, sex, evidence or not of a family history of dementia, can help to identify risk factors for disease. Clinical information, such as whether or not a language or memory disorder is present, can help to identify clinical phenotypes that may have relevance for underlying biology, and allow better targeting of new dementia therapies. This valuable information is routinely acquired as part of patients’ clinical diagnostic assessment and follow-up at the Cerebral Function Unit. Our research database was set up in 2009 and we currently have stored data on 1165 participants with their written informed consent. We maintain a) a research register, containing names of people who agree to their clinical data being used in research and / or to be contacted about future research studies and b) a research database containing clinical data from those patients.
Research programme
The purpose of the database is to facilitate research into neurodegenerative diseases, in particular early onset dementias. The database is principally for clinical research, allowing us to better understand the clinical characteristics of disease. However, it will also support collaborative studies in molecular genetics and neuropathology. The types of study include: - Analysis of demographics, clinical phenotypes, nature of cognitive and neurological symptoms and signs associated with specific disorders. - Case studies (with care taken to ensure that all potentially identifiable information is removed). - Comparison of specific clinical measures in distinct disorders. - Clinical phenotype genotype studies (linked CLRN supported, molecular genetics study for which separate ethical approval has been obtained – REC reference 05/Q1405/24). - Clinical histopathological phenotype studies (linked Brains for Dementia Research initiative, cofounded by Alzheimer’s Research UK and the Alzheimer’s Society – REC reference 09/H0906/52+5). - Clinical background information supporting neuroimaging studies (linked to Wolfson Molecular Imaging Centre at the University of Manchester). The research team includes neurologists, neuropsychologists, clinical research fellows, research assistants and PhD students, and our collaborators in neuroscience, genetics and pathology, together with their research teams.
Research database title
Cerebral Function Unit database for research into neurodegenerative conditions
Establishment organisation
Salford Royal NHS Foundation Trust
Establishment organisation address
Stott Lane
Salford
Greater Manchester
M6 8HD