Status:
COMPLETED
Evaluation of Impact of Disease on Quality of Life, Education and Socio-professional Integration of Adults and Parents of Children Living with Sickle- Cell Disease in France
Lead Sponsor:
Argo Sante
Collaborating Sponsors:
Filière de santé maladies rares MCGRE
Fédération des malades drépanocytaires et thalassémiques SOS Globi
Conditions:
Sickle-cell Disease (SCD)
Eligibility:
All Genders
18+ years
Brief Summary
Sickle cell disease (SCD) is the most common genetic disease in France. Its consequences on patient's life-course and quality of life need to be precisely identified among French patients and their fa...
Detailed Description
This is a retrospective study. Patients or parents of minor patients living in France and suffering from SCD will be informed about the study and enrolled during their usual follow-up, or by patients'...
Eligibility Criteria
Inclusion
- 18 years or older
- Diagnosed with SCD or parent of a minor child diagnosed with SCD
- Able to speak and understand French
- Willing to participate to the study
Exclusion
- Person having serious difficulties to read or speak French, unable to answer the questions
- Person suffering from other chronic disease which could bias the representation they have about SCD
- Patient cured with a bone marrow transplant
- Patient with mental disorder preventing the patient to understand the study
Key Trial Info
Start Date :
June 2 2020
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
April 27 2021
Estimated Enrollment :
1088 Patients enrolled
Trial Details
Trial ID
NCT04413539
Start Date
June 2 2020
End Date
April 27 2021
Last Update
January 29 2025
Active Locations (1)
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1
Centre de références syndromes drépanocytaires majeurs thalassémie et autres maladies rares du globule rouge et de l'érythropoïése
Créteil, France