Oxford Neurodegeneration Database renewal
Research type
Research Database
IRAS ID
170018
Contact name
Martin Turner
Contact email
Research summary
Oxford Motor & Other Neurodegenerative Disorders Clinic Database
REC name
HSC REC B
REC reference
15/NI/0096
Date of REC Opinion
18 Jun 2015
REC opinion
Favourable Opinion
Data collection arrangements
Data will be collected from patients attending the Oxford Motor & Other Neurodegenerative Disorders Clinic, and will take place during clinic appointments.
Data to be stored includes names, dobs, contact details, and GP details. Clinical details include diagnosis, disease onset, clinical
examination findings, any interventions (e.g. non-invasive ventilation) or notification of Advance Directives.
This is stored on a secure server with access only by a small group of staff involved in patient care. Any data that is shared or published will be in a fully anonymised form.Research programme
Maintaining a database of clinic patients is primarily aimed at optimising their care. Neurodegenerative diseases are devastating for both patient and carer and often require liaison between several healthcare professionals, especially the GP. Having accessible, secured contact details and information about the state of disease, interventions and Advanced Directives is vital to this care. Population studies using hospital records, and clinic-based databases have made a large impact on the global understanding of neurodegenerative diseases over the last 20 years. Anonymised information about diagnosis, onset of symptoms, medical background, demographics and examination findings over time, helps us to understand more about how these diseases vary across a clinic population. This can be used to identify prognostic factors and improve care planning and advice. We would analyse and publish data in group form and without the ability to identify any individual.
Research database title
Oxford Motor & Other Neurodegenerative Disorders Clinic Database
Establishment organisation
Oxford Radcliffe Hospitals NHS Trust
Establishment organisation address
Department of Clinical Neurology
West Wing Level 3 John Radcliffe Hospital
Oxford
OX3 9DU