Database of UK recipients of pituitary-derived human growth hormone
Research type
Research Database
IRAS ID
366205
Contact name
Gargi Banerjee
Contact email
Research summary
Database of UK recipients of pituitary-derived human growth hormone
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
26/EE/0006
Date of REC Opinion
19 Jan 2026
REC opinion
Favourable Opinion
Data collection arrangements
We wish to create two new research databases by updating an existing historical database (held by UK HSA) with further personal identifiable information from NHS Digital. UK HSA already legally hold this confidential personal data without consent in the public interest, under Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002.
The two new research databases are:
1. “Surveillance Snapshot” Research Database; an “opt-out” database, where people are automatically included but can let us know if they choose not to take part. This database will include NHS data on hospital attendances for neurological symptoms and diagnoses.2. “Permission to contact” Research Database; an “opt-in” database, where people need to provide specific consent to be included. We will approach people via their GPs to ask for consent to contact them in future regarding relevant research projects.
Research programme
In order to better understand whether people who received pituitary-derived human growth hormone are at risk of neurological conditions other than iatrogenic CJD, we wish to create two new research databases. Both of these use data from a pre-existing historical database current held by UK HSA (the UK Health Security Agency) on behalf of DHSC (the Department of Health and Social Care). The potential benefits of this database and subsequent research are: • To confirm whether recipients of pituitary-derived human growth hormone are at risk of iatrogenic CAA and/or iatrogenic Alzheimer’s disease, and if they are, to ensure they can be monitored and receive appropriate clinical care, including interventions that aim to reduce their future risk of stroke • If recipients of pituitary-derived human growth hormone are at risk of developing iatrogenic CAA and/or iatrogenic Alzheimer’s disease, we intend to educate and update other clinical providers on this risk, so that at-risk individuals can receive relevant information (if they so wish) and care • To review whether recipients of pituitary-derived human growth hormone are at risk of other neurological diseases caused by iatrogenic protein transmission • To update public health bodies about these potential risks; it might be necessary to institute new public health measures (for example, relating to instrument sterilisation) in order to prevent future cases of disease
Research database title
Database of UK recipients of pituitary-derived human growth hormone
Establishment organisation
MRC Prion Unit at UCL, Institute of Prion Diseases
Establishment organisation address
Courtauld Building
33 Cleveland Street
London
W1W 7FF