Hemophilia A, Hemophilia B
Conditions
Brief summary
The purpose of this study is to validate the newly developed Hemophilia Functional Ability Scoring Tool (Hemo-FAST), which is a fast and simple scoring in haemophilia able to assess patient-reported functional mobility.
Detailed description
The purpose of this study is to validate the newly developed Hemophilia Functional Ability Scoring Tool (Hemo-FAST), which is a fast and simple scoring in haemophilia able to assess patient-reported functional mobility for adult haemophilia patients.
Interventions
DIAGNOSTIC_TESTHemophilia Joint Health Score (HJHS)
Joint examination with Hemophilia Joint Health Score (HJHS)
Sponsors
Kantar Health
Cerner Enviza (former Kantar Health)
Swedish Orphan Biovitrum
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
A patient must fulfil the following criteria in order to be included in the study: 1. Age ≥18 years. 2. Diagnosis of haemophilia A or B. 3. Capable of completing the study Patient-Reported Outcome (PRO) questionnaires in French. 4. Signed informed consent.
Exclusion criteria
The presence of any of the following criteria will exclude a patient from inclusion in the study: 1. Joint replacement within last 6 months. 2. Patients with a non-resolved joint or muscle bleeding event at the enrolment visit or ≤ 7 days prior to the enrolment visit. 3. Patients with comorbid illnesses such as juvenile arthritis, muscular dystrophy, neurologic illness/cognitive impairment, or other illnesses that may independently affect HJHS and Hemo-FAST scores and/or limit the ability of the patient to participate in the study as determined by the investigator.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Psychometric validation of the Hemophilia Functional Ability Scoring Tool (Hemo-FAST). | Baseline | Statistical analysis to confirm the psychometric validation of the Hemo-FAST questionnaire |
Countries
France
Outcome results
None listed