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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

NCT04413539 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 1088

Last updated 2025-01-29

No results posted yet for this study

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 family to be able to improve patients care according to their specific needs.

The aim of the study is to accurately describe the impact of SCD on quality of life of patients living in France, or their family (for minor patients). The consequences of the disease on professional life, education and material condition of patients or their parents will be described by the patients themselves.

Conditions

  • Sickle-cell Disease (SCD)

Sponsors & Collaborators

  • Filière de santé maladies rares MCGRE

    collaborator UNKNOWN

  • Fédération des malades drépanocytaires et thalassémiques SOS Globi

    collaborator UNKNOWN

  • Genetix Biotherapeutics Inc.

    collaborator INDUSTRY

  • Argo Sante

    lead OTHER

Principal Investigators

  • Frederic Galacteros, MD,PhD,Prof. · Red Cell genetic diseases unity, Henri Mondor Hospital, Paris

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2020-06-02
Primary Completion
2021-04-27
Completion
2021-04-27

Countries

  • France

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04413539 on ClinicalTrials.gov