Quality of Life in Patients With Congenital Afibrinogenemia

Description

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.

Study Start Date

June, 01 2016

Estimated Completion Date

December 2018

Interventions

  • Other: Questionnaire quality of life

Study ID

University Hospital, Geneva -- 2016-00447

Status

Recruiting

Trial ID

NCT03484065

Study Type

Observational

Trial Phase

Not Listed

Enrollment Quota

150

Sponsor

University Hospital, Geneva

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

Gender

All

Ages

8 Years and older

Accepts Healthy Volunteers

No

Study Locations and Contact Information (2)

Study Location Distance Name Phone Email
Cohen Childrens Medical Center - New Hyde Park, New York 39.6 miles None None None
Childrens Hospital of Orange Count - Orange, California 2,477.9 miles Diane Nugent None None

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