PIND Research Database version 1
Research type
Research Database
IRAS ID
287783
Contact name
Christopher Verity
Contact email
Research summary
PIND Research Database
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
21/EE/0131
Date of REC Opinion
12 Jul 2021
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This Research Database will preserve 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"). This study commenced in 1997 and has provided detailed information about the many rare disease that cause neurological deterioration in children. By October 2019 the PIND Study had identified 2008 children with a known diagnosis and there were more than 220 different diseases in this diagnosed group. The PIND Study is still active, obtaining full clinical details on all children and thus providing a rich source of information about their age and ethnicity, their early and subsequent symptoms and about the means of diagnosis. This invaluable information will be lost if not stored in digital form in this supervised Database, available on application to suitable researchers after the PIND Study ceases. It should be noted that the PIND Study obtained all the necessary approvals from the relevant regulatory bodies in the UK, allowing the Study to gather clinical information about notified patients.
Research programme
The PIND Study has 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, which is 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 these support groups. Those who apply to use the Database will have to justify the reasons for their request and be specific about the particular topics that they want to research. The British Paediatric Neurology Association (BPNA) provides a focus for many of the clinicians and academics who are interested in neurological disease in children. BPNA meetings include representatives from many parent support groups. The PIND Research Database Chief Investigator 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