Database of UK recipients of pituitary-derived human growth hormone
Research type
Research Database
IRAS ID
276490
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
21/EE/0060
Date of REC Opinion
12 Apr 2021
REC opinion
Further Information Favourable Opinion
Data collection arrangements
We wish to update a pre-existing historical database (held by Great Ormond Street Hospital) with personal identifiable information from NHS Digital. We wish to do to this so we can contact the people listed in this database to ask for their consent for their data to be used for research purposes. The pre-existing historical database is held for public health reasons and was created prior to current information governance guidance. We will seek informed consent prior to using any identifiable data, and before contacting any listed individuals for research purposes.
Having confirmed details for individuals included in the pre-existing historical database, we will initially contact the person's GP (by post, telephone, or both), firstly to confirm that this is the correct individual. We will ask for consent to contact people listed in our database for research purposes by asking their GP is to provide a written consent form, information sheet and privacy notice to each data subject, which we will ask the individual to return by email or post (postage paid).
Research programme
We wish to generate a pseudonymised research database in order to conduct research investigating whether people who received injections of pituitary-derived cadaveric human growth hormone (c-hGH) are at risk of developing a disease called iatrogenic cerebral amyloid angiopathy (iCAA). The potential benefits of this database and subsequent research are: • To confirm whether c-hGH recipients are at risk of iCAA, 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 c-hGH recipients are at risk of developing iCAA, we intend to educate and update other clinical providers on this risk, so c- hGH recipients can receive relevant information (if they so wish) and care • To update public health bodies about the potential risk of this disease; 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
University College London (UCL)
Establishment organisation address
Gower Street
Bloomsbury
London
WC1E 6BT