How can I get patient-identifying data?
Under the legislation, there are strict conditions about when and how fertility patients’ personal information can be made available to researchers.
Research involving patient identifiers is always a last resort. It can only happen:
- if the research is of high quality and has been approved by an ethics committee
- if consent to disclosure cannot effectively be obtained from the patients
- if the research cannot happen (not even in an amended form) with anonymised data.
Even if release is approved, it will only be:
- for the smallest possible number of patients
- for the smallest possible number of identifiers (eg, date of birth or name)
- for the shortest time period possible (ie, identifiers have to be removed once data from our Register has been linked to another dataset).
To apply for access to patient-identifying data for medical research, you will need to go through the National Information Governance Board (NIGB) integrated research application system.
To apply for access to patient-identifying data for non-medical research, you’ll need to email us at firstname.lastname@example.org.
Our Register Research Panel decides whether your application is granted or refused.