It is well known that many cases of FH are not identified. FH Europe has sought to find out which parts of Europe have made most progress and which would benefit from support from FH Europe and its member organisations.
A ‘heat map’ works on a ‘traffic lights’ system of red (= problem), amber = good in parts/current funding may be at risk) and green (= everything is satisfactory).
In early 2017 a questionnaire was sent to all member organisations asking them three basic questions about the national situation regarding FH. The first two questions related to a FH Register or Registry. A FH Registry is a database (electronic record) where medical information, family history and other related information from patients is collected and stored to help researchers increase the knowledge of FH treatments and their safety in order to improve healthcare outcomes.
The third question we asked members related to ‘testing’ or ‘screening’ for FH. The establishment of a range of national FH services such as cascade testing/screening identifies family members across the country and plays a key role in improving public health outcomes and equal access to healthcare for FH patients. Members were asked if a cascade testing/screening system was in place in their country.
FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt