Quality of Life in Patients With Congenital Afibrinogenemia (QualyAFIB)

University Hospitals (UH)

Status: Completed

Conditions: Afibrinogenemia, Congenital

Treatments: Other: Questionnaire quality of life

Study type: Observational

Funder types: Other

Identifiers

NCT03484065

2016-00447

Details and patient eligibility

About

The aim of this observational study is to evaluate the quality of life in patients with congenital afibrinogenemia using the Haemo-QoL SF for kids and the Haem-A-QoL for adult patients.

Full description

In this observational study, children and adults suffering from congenital afibrinogenemia confirmed by biology will be enrolled. All patients will receive a questionnaire on quality of life in their own language during a routine visit and filled out by the patient at home. A general questionnaire will be filled out by the patient's physician.

Enrollment: 250 patients

Sex: All

Ages: 8+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Congenital afibrinogenemia confirmed by biology (absence of circulating fibrinogen) and genotype

Exclusion criteria

• Lack of participant's consent
• Patient unable to understand the questionnaire

Trial design

250 participants in 1 patient group

Afibrinogenemia

Treatment:

Other: Questionnaire quality of life