Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what steps his Department is taking to introduce a UK-wide national patient register and database for familial hypercholesterolemia.

Public Health England (PHE) has established the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which brings together data from existing regional and disease specific registries into a single register. A certain form of familial hypercholesterolemia (FH) - homozygous FH - is classified as a rare disease and so is included in NCARDRS. Further information can be found at:

https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs

A registry containing information about children across England affected by FH is also already in existence. There are no current plans to develop any other national patient register and database for recording people with FH. However, where a family member has been diagnosed with FH, many of the cases are being recorded using cascade system software. The recording of such data is likely to increase across England as FH services are established.

The Government has no plans to report annually on the progress made in increasing the number of people diagnosed with FH in England. However NHS England and PHE are working to raise the profile of FH and making the use of genetic testing more routine.