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| ID | Type | Description | Link |
|---|---|---|---|
| 2021-A02518-33 | Other Identifier | ID-RCB number, ANSM |
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| Name | Class |
|---|---|
| APEHDia, a french CDH patient association | UNKNOWN |
| Rare Disease Foundation, France | UNKNOWN |
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The objective is to understand how a population of adolescents - who have undergone diaphragm surgery within their first month of life (i.e. subjects who have been carriers of a rare impacting disease such as congenital diaphragmatic hernia (CDH)) - engages in physical and sports activities and what can be the hindering factors as well as the factors facilitating these practices.
Based on self-questionnaires and semi-structured interviews, this research is a qualitative research in the field of human and social sciences.
The qualitative survey will make it possible to report on the experience of the disease of children and parents; in parallel, a complete medical evaluation of the subjects (clinical and para-clinical) will be carried out.
The analysis of the verbatim of the self-questionnaires and interviews with regard to the real physical capacities of the subjects, will be discussed.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Adolescents who had CDH surgery in the first month of life, | without any other pathology, now aged 12-18 and followed up at the CDH Lille Reference Center |
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| Measure | Description | Time Frame |
|---|---|---|
| Self-questionnaire (for the subjects) | to collect the level of investment of the subject in their sport participation (from the subject's point of view) | At the time of inclusion |
| Self-questionnaire (for the subject's parents) | to collect the subject's level of involvement in their sport (from the subject's parents' point of view | At the time of inclusion |
| semi-directive interview of the subject | allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject (the adolescent) | At the time of inclusion |
| semi-directive interview of the subject's parents | allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject's parents | At the time of inclusion |
| Measure | Description | Time Frame |
|---|---|---|
| study of the diaphragmatic kinetics by cardiac MRI | Complete clinical examination of the subjects and detailed paraclinical evaluation according to the recommendations of the PNDS with the addition of a sequence during the cardiac MRI allowing the study of the diaphragmatic kinetics. | At the time of inclusion |
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Inclusion Criteria:
Exclusion Criteria:
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All adolescents who had CDH surgery in the first month of life, without any other pathology, now aged 12-18 and followed up at the CDH Lille Reference Center, will be asked to take part in the study.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Sébastien MUR, MD | Contact | 0320445962 | +33 | sebastien.mur@chu-lille.fr |
| Name | Affiliation | Role |
|---|---|---|
| Sébastien MUR, MD | University Hospital, Lille | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| chu de Lille | Recruiting | Lille | France |
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| ID | Term |
|---|---|
| D065630 | Hernias, Diaphragmatic, Congenital |
| D009043 | Motor Activity |
| ID | Term |
|---|---|
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D006548 | Hernia, Diaphragmatic |
| D000082122 | Internal Hernia |
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| Self-questionnaire and interviews (for the subjects) |
Analysis of the verbatim of the self-questionnaires and the interviews, with regard to the real physical capacities of the subjects. |
| At the time of inclusion |
| D006547 | Hernia |
| D020763 | Pathological Conditions, Anatomical |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D001519 | Behavior |