Document is current

Article History

Received: 11 April 2025

Revised: 2 July 2025

Accepted: 21 August 2025

First Online: 14 October 2025

Competing interests

: SL: Trustee of Cambridge Rare Disease Network (2017-2024); GC: Trustee of Cambridge Rare Disease Network; employed by the NHS to encourage uptake of the genomic testing available to patients in England through the NHS Genomic Medicine Service, per the NHS Genomics Strategy; holds shares in Personalis, Digital Surgery, Healx, Kaia Health, Lifesum, Oncimmune, Sophia, Zoe; advisory services to Takeda; JB: Employee of CamRARE; VM: Employee of CamRARE; LS: Volunteer for CamRARE (2020–2023); JC: Volunteer for CamRARE; EW: Employee of Costello Medical; AL: Employee of Costello Medical. CamRARE have received a grant from Alexion AstraZeneca to support staff costs to create the most recent passport template and resources, print the follow-up report and create a system for disseminating the passport to those wanting to use it.

: In accordance with the verdict of the Health Research Authority decision tool, ethics committee review was not required as this study was conducted for the purpose of service evaluation and was thus not deemed research. A privacy notice and participant information sheet was shared with all patient and caregiver participants; informed consent was thus gained through the act of submitting a response to the surveys.