Quality of Life in Patients With Congenital Afibrinogenemia
| Status: | Recruiting |
|---|---|
| Conditions: | Hematology |
| Therapuetic Areas: | Hematology |
| Healthy: | No |
| Age Range: | 8 - Any |
| Updated: | 2/22/2019 |
| Start Date: | June 2016 |
| End Date: | June 2019 |
| Contact: | Alessandro Casini, MD |
| Email: | alessandro.casini@hcuge.ch |
| Phone: | 41 79 55 35 482 |
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.
congenital afibrinogenemia using the Haemo-QoL SF for kids and the Haem-A-QoL for adult
patients.
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.
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.
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
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