Accueil FranceCoag project Data collected and questionnaires

Data collected and questionnaires

Data collected in FranceCoag are grouped into seven main questionnaires.

1. Patient identification

Surname, first names, French social security number (NIR), contact details.

2. General characteristics

  • diagnosis of the inherited bleeding disorder (type of deficiency and severity, as defined by the ISTH recommendations1);
  • demographic characteristics;
  • family history;
  • records of objection or non-objection to data processing;
  • genetic data.

3. FranceCoag visits

Dates and type of FranceCoag visits.

4. Comorbidities and events

  • comorbidities and Charlson comorbidity index;
  • joint events: haemarthroses and their treatment, target joints, annualised joint bleeding rate (AJBR), Haemophilia Joint Health Score (HJHS);
  • bleeding events: severe spontaneous or traumatic bleeds, annualised bleeding rate (ABR), ISTH Bleeding Assessment Tool (ISTH-BAT), Higham score;
  • surgery and invasive procedures, and their treatment;
  • obstetric events and their treatment;
  • serious adverse events (SAEs).

5. Treatment

  • Replacement therapy: products used, treatment periods, treatment regimens, efficacy and/or adherence;
  • Non-replacement therapy: products used, indications and regimens for events and for certain disorders.

6. Laboratory tests

7. Patient- or parent-reported data

  • General information: origin, place of residence, family situation;
  • Education: level of education, qualifications, educational choices related to the disorder;
  • Employment: current employment, type of contract, socio-professional category, difficulties at work, sick leave;
  • Social situation: social welfare benefits related to the disorder;
  • Household income: sources of income, financial difficulties;
  • Physical activity: sports practised and frequency;
  • Life events;
  • Health status: EQ-5D;
  • Healthcare: participation in therapeutic patient education programmes, distance between home and treatment centre, treatment adherence;
  • Quality of life: WHOQOL and VSPA (adolescent quality of life) questionnaires.

Questionnaires (in French)

Reference

1. White 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;85(3):560.

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