Status:

COMPLETED

Quality of Life in Patients With Congenital Afibrinogenemia

Lead Sponsor:

University Hospital, Geneva

Conditions:

Afibrinogenemia, Congenital

Eligibility:

All Genders

8+ years

Brief Summary

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.

Detailed 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 ...

Eligibility Criteria

Inclusion

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

Exclusion

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

Key Trial Info

Start Date :

June 1 2016

Trial Type :

OBSERVATIONAL

Allocation :

ACTUAL

End Date :

June 1 2020

Estimated Enrollment :

250 Patients enrolled

Trial Details

Trial ID

NCT03484065

Start Date

June 1 2016

End Date

June 1 2020

Last Update

November 12 2020

Active Locations (28)

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Page 1 of 7 (28 locations)

1

Children's Hospital of Orange Count

Orange, California, United States, 92868

2

Cohen Children's Medical Center

New Hyde Park, New York, United States, 11040

3

Béni Messous

Algiers, Algeria

4

University of Calgary

Calgary, Canada