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
Unknown
Trial ID
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 | |
---|---|---|---|---|
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 |