Status:

COMPLETED

Quality of Life and Adjustment Among Siblings of Children and Adolescents With Severe Hemophilia

Lead Sponsor:

Assistance Publique Hopitaux De Marseille

Conditions:

Severe Haemophilia

Eligibility:

All Genders

8-18 years

Brief Summary

Severe hemophilia is a rare and chronic disease characterized by spontaneous bleedings from early childhood, which may lead to various complications especially in joints. The diagnosis of this disease...

Detailed Description

-The assessment of the quality of life would allow assessing both positive and negative impacts, by exploring in a global manner the children and adolescents functioning in various domains (physical a...

Eligibility Criteria

Inclusion

  • Sibling (brother, sister, half-brother or half-sister) of older children or adolescents included in the TRANSHEMO study, who lives in the same home)
  • Sibling aged 8-18 years old
  • Sibling affiliated to the French social security system
  • Sibling whose parents are not opposed to the participation in the study

Exclusion

  • Sibling (brother, sister, half-brother or half-sister) of older children or adolescents who are not included in the TRANSHEMO study)
  • Sibling aged under 8 or over 18 years old
  • Sibling not affiliated to the French social security system
  • Sibling whose parents are opposed to the participation in the study
  • Sibling with difficulties reading and writing
  • Sibling with learning disabilities

Key Trial Info

Start Date :

March 15 2020

Trial Type :

OBSERVATIONAL

Allocation :

ACTUAL

End Date :

May 1 2021

Estimated Enrollment :

30 Patients enrolled

Trial Details

Trial ID

NCT03299699

Start Date

March 15 2020

End Date

May 1 2021

Last Update

June 8 2023

Active Locations (1)

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Hôpital de la Timone Assistance Publique Hôpitaux de Marseille

Marseille, France, 13354