the severity and impact of arthropathy in patients with VWD could be significant
ID
Bron
Verkorte titel
Aandoening
patients with moderate or severe Von Willebrand disease
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
Existence of arthropathy: the number and percentage of patients with arthropathy among the different patient groups.
Severity of arthropathy: separate and cumulative scores of HJHS and Pettersson.
Impact of arthropathy on physical functioning and participation: time to complete the figure 8 walking test, separate and cumulative scores of (Ped)HAL and IPA questionnaires.
Impact on quality of life: separate and cumulative scores of D-AIMS2-affect and MPQ-DLV questionnaires.
Achtergrond van het onderzoek
Cross sectional multicenter cohort study that investigates the prevalence, severity and impact of arthropathy in patients with moderate and severe Von Willebrand disease and documented treatment of joint bleeds with desmopressin or clotting factor concentrate compared to moderate and severe VWD patients without such documented joint bleed treatment.
Doel van het onderzoek
the severity and impact of arthropathy in patients with VWD could be significant
Onderzoeksopzet
one assessment no follow up assessments planned
Onderzoeksproduct en/of interventie
assessment of joint damage, joint pain and related functional and social impairment by 4 questionnaires for adults, 1 for children, 1 physical joint examination, joint X-rays and 1 functional test. The physical joint examination and functional test will be scored by an experienced physiotherapist using the Haemophilia Joint Health Score (HJHS). The functional test consists of a figure 8 walking test. X-rays will be taken of affected and contralateral joints in all participants aged>12 years and of the same joint in a matched control patient.
Publiek
K.P.M. Galen, van
Utrecht
The Netherlands
VCK-secretariaat@umcutrecht.nl
Wetenschappelijk
K.P.M. Galen, van
Utrecht
The Netherlands
VCK-secretariaat@umcutrecht.nl
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
Patients with moderate or severe VWD treated with coagulation factor or desmopressin for 1 or more joint bleeds as documented in their MF.
A similar size control group of age (< 2 years difference), FVIII and sex matched moderate or severe VWD patients who participated in the WiN study, indicated that they would like to participate in future studies, and did not report treatment for 1 or more joint bleeds and also did not have joint bleeds recorded in their MF.
Also eligible for the control group are moderate or severe VWD patients who did not participate in the WiN study and are currently treated at the haemophilia treatment centres in the Netherlands who have not been treated with coagulation factor or desmopressin for 1 or more joint bleeds and without joint bleeds treatment documented in their MF.
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
Inability of the patient or the patients parents to give informed consent
A recent joint bleed without complete recovery
Restricted motion of an ankle, knee or elbow joint for another medical reason
No medical file available
Age<4 years
Opzet
Deelname
Opgevolgd door onderstaande (mogelijk meer actuele) registratie
Andere (mogelijk minder actuele) registraties in dit register
Geen registraties gevonden.
In overige registers
| Register | ID |
|---|---|
| NTR-new | NL4424 |
| NTR-old | NTR4548 |
| CCMO | NL38989.041.12 |
| OMON | NL-OMON39851 |