Long-term health after treatment with cadaveric human growth hormone

We are interested in the long-term health of people who received treatment with cadaveric human growth hormone . You can find out more about treatment with cadaveric human growth hormone here

Two following studies are currently underway. They have been approved by the East of England - Cambridge Central Research Ethics Committee (REC reference 21/EE/0060). We also have support from the NHS HRA Confidentiality Approval Group to use confidential personal data without consent for these projects. The legal basis for this is Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 (’Section 251 support’).

"Surveillance Snapshot" Research Database
We are creating a new research database, which includes details of all people who received treatment with pituitary-derived human growth hormone in the United Kingdom between 1959 and 1985. We are using this data to see whether people who received this are at increased risk of any neurological diseases compared to people who did not receive this treatment.

We will do this by reviewing NHS data on hospital attendances for neurological symptoms and diagnoses. For people who have died, we will also review cause of death. Confidential personal data will be used to identify the correct NHS records on our behalf by UK HSA (Health Security Agency) and NHS England (previously NHS Digital). Once this data has been linked, all identifiable information will be removed; this anonymised version will be transferred to us. Information used for research analysis will therefore not contain any identifiable details, so nobody using this data for research purposes will be able to identify an individual from the information that they have access to.

There is no practical alternative to using confidential personal data because in order for the research methods to be robust, we need to include as many people who received this treatment as possible (ideally everyone). We are minimising our use of identifiable data by asking UK HSA (who already have access to the identifiable data) to transfer data to NHS England (previously NHS Digital) for us.

If you do not wish for your health records to be accessible, you can opt out of this database at any time. This will not affect your NHS care, now or in the future.

Please contact:
Gargi Banerjee: gargi.banerjee@nhs.net
020 7679 5142

Further information can be found in the

"Permission to Contact" Research Database
This database will include details of people who received treatment with pituitary-derived human growth hormone in the United Kingdom between 1959 and 1985, and who:

Are alive and resident in the United Kingdom
Have provided consent to be part of the database

We plan to contact people via their GPs to ask for their consent. In order to do this, we will use confidential personal data currently held by UK HSA (Health Security Agency) to identify the relevant GPs.

There is no practical alternative to using confidential personal data because in order to contact people for consent, we need to know who they are. We are minimising our use of identifiable data by asking UK HSA (who already have access to the identifiable data) to link the NHS England (previously NHS Digital) data for us, which they can do “in house” (i.e. without transfer of identifiable data) and provide us with the minimum number of details needed for contact.

Once contacted, the person’s GP will be asked to share a consent pack, provided by us, with the relevant person. The person will then have the opportunity to review consent pack, and make their decision on whether to participate.

You can find copies of the following study documents using the links below:

Consent form
Information sheet
Participant Notification
Privacy Notice (UCL)

Please note: These study documents may not be reproduced without permission.