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Quality of Life in Patients With Congenital Afibrinogenemia (QualyAFIB)

University Hospitals (UH) logo

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

Trial contacts and locations

28

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Data sourced from clinicaltrials.gov

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