PIND Research Database version 1
Research type
Research Database
IRAS ID
369304
Contact name
Christopher Verity
Contact email
Research summary
PIND Research Database version 1
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
26/EE/0122
Date of REC Opinion
21 May 2026
REC opinion
Favourable Opinion
Data collection arrangements
This Research Database preserves a unique source of epidemiological and clinical data obtained by a UK-wide study of progressive intellectual and neurological deterioration in children (the "PIND Study"). The Study commenced in May 1997 and was completed in April 2024. All the necessary approvals from the relevant regulatory bodies in the UK were obtained, allowing the Study to gather clinical data about notified patients. The Study provided detailed information about the many rare diseases that cause neurological deterioration in children, identifying 2373 children with a known diagnosis - there were more than 220 different diseases in this diagnosed group. There is information about age and ethnicity, early and subsequent symptoms and about the means of diagnosis. This unique research database is now stored on the Eastern Sub-National Secure Data Environment for R&D, part of the NHS Research Secure Data Environment Network.
Research programme
The PIND Study yielded unique information about many rare neurodegenerative diseases of childhood. This information is invaluable to paediatricians presented with the challenge of diagnosing these diseases and will be helpful to experts in genetics and biochemistry, because so many of the disorders are inherited and affect the basic metabolic processes in the body. The UK-wide data provide information about the distribution of these rare disorders among children of different ages and from different ethnic groups, of interest to epidemiologists and sociologists. There are many support groups for parents and carers of children with rare disorders - the clinical information collected by the PIND Study is of great interest to them. Those who apply to use the Research Database will have to justify their request and be specific about the particular topics that they want to research. The British Paediatric Neurology Association (BPNA) provides a focus for clinicians and academics who are interested in neurological disease in children. BPNA meetings include representatives from many parent support groups. The PIND Research Database Clinical lead will use the networks provided by the BPNA to bring the Database to the attention of those who could utilise this unique resource.
Research database title
PIND Research Database version 1
Establishment organisation
Cambridge University Hospitals NHS Foundation Trust
Establishment organisation address
Hills Road
Cambridge
CB2 0QQ