Quality of Life in Patients With Congenital Afibrinogenemia
Completed
Conditions studied: Afibrinogenemia, Congenital
In brief
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.
Key facts
- Study ID
- NCT03484065
- Run by
- University Hospital, Geneva
- People needed
- 250
- Starts
- 2016-06-01
- Expected to finish
- 2020-06-01
- Last updated by the study team
- 2020-11-12
Who can join
Age: 8 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Congenital afibrinogenemia confirmed by biology (absence of circulating fibrinogen) and genotype
You may not qualify if…
- Lack of participant's consent
- Patient unable to understand the questionnaire
Where it is running
- Children's Hospital of Orange Count — Orange, California, United States
- Cohen Children's Medical Center — New Hyde Park, New York, United States
- Béni Messous — Algiers, Algeria
- University of Calgary — Calgary, Canada
- Cairo University Pediatric Hospital — Cairo, Egypt
- Chru Lille — Lille, France
- Universitats Kilinikum Frankfurt — Frankfurt, Germany
- Dr von Haumer Children's Hospital — Munich, Germany
- St John Medical College Hospital — Bangalore, India
- All India Institute of Medical Sciences — New Delhi, India
- Sapienza Università di Roma — Roma, Italy
- University School of Medicine — Hamamatsu, Japan
- Kuwait University — Kuwait City, Kuwait
- Hotel Dieu-de-France — Beirut, Lebanon
- St George Hospital — Beirut, Lebanon
- Hopital d'Enfants de Rabat — Rabat, Morocco
- Radboud University Medical Centre — Nijmegen, Netherlands
- National Institute Of Blood Disease and Bone Marrow Transplantation — Karachi, Pakistan
- Institute of Hematology and Transfusion Medicine — Warsaw, Poland
- University Clinical Center — Belgrade, Serbia
- National Centre of Hemostasis and Thrombosis — Martin, Slovakia
- Hospital Universitari i Politecnic La Fe — Valencia, Spain
- Inselspital — Bern, Switzerland
- University Hospitals of Geneva — Geneva, Switzerland
- Hopital d'Enfants Bechir Hamza — Tunis, Tunisia
Full record on ClinicalTrials.gov
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