1. Patient identification (surname, first name, NIR, contact details, etc.) ;

2. General characteristics :

• how HCM is diagnosed (type of deficit and severity defined according to ISTH¹ recommendations),
• the patient’s demographic characteristics,
• the patient’s family history,
• various notifications of opposition and non-opposition,
• genetic data ;

3. Dates and arrangements for visits FranceCoag ;

4. Comorbidities and events :

• comorbidities and the Charlson score,
• joint events: haemarthrosis and treatment, target joints, AJBR score, HJHS score,
• bleeding events: serious spontaneous or traumatic bleeding, ABR score, ISTHBat score, HIGHAM score,
• surgery and invasive procedures and their treatment,
• obstetric events and their treatment,
• Serious adverse events (SAEs);

5. Support :

• substitution treatments :
  • therapeutic names,
  • substitution periods,
  • substitution arrangements,
  • effectiveness and/or adherence ;

• non-substitutive treatments :
  • therapeutic names,
  • indications/treatment methods for events and for certain MHC ;

6. Biological tests ;

7. Patient/parent self-reported data :

• General data: patient’s origins, place of residence, family situation ;
• Educational background: level of education achieved, qualifications, orientation in relation to the HCM ;
• Career history: current employment status, type of contract, socio-professional category, difficulties at work, work stoppages, etc;
• Social situation: minimum social benefits received in connection with the HCM ;
• Household resources: origin of resources, financial difficulties ;
• Physical activities: sports practised, pace of sessions ;
• Life events ;
• State of health: EQ-5D score ;
• Taking charge of the patient’s health: participation in ETP programmes, geographical distance between home and the HCM treatment centre, compliance with medication ;
• Quality of life: WHOQOL and VSPA questionnaires.

 ¹White GC 2nd, Rosendaal F, Aledort LM, Lusher JM, Rothschild C, Ingerslev J; Factor VIII and Factor IX Subcommittee. Definitions in hemophilia. Recommendation of the scientific subcommittee on factor VIII and factor IX of the scientific and standardization committee of the International Society on Thrombosis and Haemostasis. Thromb Haemost. 2001 Mar;85(3):560.