Quality of life in siblings of adolescents with severe hemophilia
(NCT03299699)

Progress

Inclusions closed on 01/05/2021
Analysis in progress

Presentation and objectives

Study of sibling relationships in relation to children’s emotional development (quality of life and experience). The case of siblings of children with rare hemorrhagic diseases.

Persons concerned
Type of data collected
(*data excluding FranceCoag)

Adolescents aged 8 to 18 in the TRANSHEMO study

Quality of life Coping strategies Emotional well-being Social support

Regulatory approvals
Information note

Favourable opinion from the Ethics Committee of Aix Marseille University
MR004 declared to the CNIL

NI Children
NI Teenagers
NI Parents

Project sponsor (financier)

Assistance publique des Hôpitaux de Marseille (AORC + BAYER Outcomes Research Award)