Familial Chylomicronemia Syndrome Clinical Trial
Official title:
Medical Complications in Familial and Multifactorial Chylomicronaemia Syndromes From a 10 Year Follow-up Linking Datasets Between Patient Medical Records and Patient Claims: the ESTHYM Study
A retrospective, systematic study of reimbursed healthcare costs over a 10 year period in
patients suffering from Familial Chylomicronaemia Syndromes (FCS) or Multifactorial
Chylomicronaemia Syndromes (MCS) in order to establish the relative healthcare burden of both
syndromes by linking the Hospices Civils de Lyon (HCL) registry of FCS or MCS patients and
data obtained from FCS or MCS patients followed in Paris, Nantes and Lyon to the French
National Health System (NHS) healthcare claims database, the Système National d'Information
Inter-Régimes de l'Assurance Maladie (SNIIR-AM).
A probabilistic approach will be used to link databases. This linkage will be based on the
following variables: age, gender, date of discharge of any hospitalization, date of any
imaging procedure.
This study will help to describe, in real life, the management of severe hyperglyceridaemia
in France. In addition, the descriptive results will help obtain a better understanding of
the patients suffering from this disease, the burden of the disease and the healthcare
consumption linked to this disease. Even if this consumption of care has been relatively
unexplored until this point, it is not negligible. The potential of merging genomics and
claims data for cardiovascular research could help to identify ways to optimize disease
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