The registry is managed by a steering committee consisting of BSACI members and patient organisations (Allergy UK and Anaphylaxis Campaign) it is chaired by Dr Mich Lajeunesse a Paediatric Allergy Consultant at Southampton Children’s Hospital. The committee is responsible for the prudent management of the registry, safety reporting of adverse events as well disseminating the findings from the project both to the medical and scientific community and to patients.
Patients who agree to participate are asked to complete a consent form which is then logged with their medical record at their treatment clinic. The patient will be required to give permission for specific identifiers (which are removed when exporting data) such as; name, DOB, email. Partial identifiers can be used for analysis and include if consented; gender, assignment, ethnicity, the four first digits of their postcode.
Identifiable and commercially sensitive information is held within the registry, which is held on a secure NHS server. BRIT is GDPR compliant and BSACI are the data controllers. Requests for analysis and data export for specific purposes will be reviewed by the steering committee and data generated will contain non identifiable data. No one person or group has access to all of the data.
BSACI Terms of Reference (ToR) define the purpose and structure of each BSACI committee. It outlines how we appoint committee members and chairs of which a job description for the chair is below.