Document is current

Article History

Received: 6 August 2024

Accepted: 7 October 2024

First Online: 13 October 2024

Declarations

:

: This study is based wholly on data from the Optimum Patient Care Research Database obtained under a limited licence from Optimum Patient Care Limited and its execution is approved by the Anonymised Data Ethic and Protocol Transparency Committee (ADEPT)—reference: ADEPT0822, Protocol 2318. However, the interpretation and conclusions contained in this report are those of the author/s alone. OPCRD is approved by the NHS Health Research Authority Research Ethics Committee (HRA REC reference: 20/EM/0148) to receive and provide anonymised datasets for scientific, exploratory and public health research. OPC receives consent from GP practices who act as Data Controllers and provide consent on-behalf of their patients for the de-identified patient data that they contribute to OPCRD for research purposes. Participating GP practices provide their written and signed consent in the form of a signed Service, Data Processing and Data Sharing Agreement between the GP practice and OPC, with explicit consent for de-identified patient data to be contributed to OPCRD for research purposes. Patients who have opted-out of data sharing are excluded from the data contributed to OPCRD. Patients are informed of data contribution to OPCRD by means of poster(s) provided to contributing GP practices for public display and patient awareness.

: Not applicable.

: During study conduct, AW, HM, JS, FBP, EM, RD, AW, EV, DO, CG and PF were employees of Mendelian. RJK receives research funding from Novartis, acts as a consultant for Sobi, AstraZeneca and Alexion. RJK also sits on the advisory boards for Alexion, AstraZeneca, Novartis, Sobi, Jazz, Amgen and receives honoraria from Alexion, Sobi, Biologix.