Patients at risk of undiagnosed rare diseases
Affinity Care is taking part in an exciting project to identify patients with undiagnosed rare diseases.
This project, running from February to May 2022, is being funded by NHS England and conducted in collaboration with the local genetics service and Mendelian, a UK-based digital health company.
Patients at risk of undiagnosed rare diseases will be flagged by features such as previous diagnoses and investigations recorded in their electronic records. Approximately 1 patient per 1000 are likely to be flagged by this process, these patients will then be contacted by the Affinity Care GP leading this project, who will suggest next steps to confirm or exclude the suggested diagnosis. The next steps may be a review with the patient’s doctor, blood tests or a referral to a hospital specialist. The vast majority of patients will not be flagged and they will therefore not be notified or necessarily be aware that this is taking place.
Mendelian is fully compliant with all legal standards and has passed the required tests in processing health care data. No patient identifiable information is held by Mendelian.
If you have any further questions or queries please contact your GP practice