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Pediatric -Adult Care Transition Program of Patients With Sickle Cell Disease

RecruitingNAAges 16 Years - 17 YearsAllHospices Civils de Lyon
NCT03786549 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

Background The pediatric-adult care transition is a risk-disrupting time for patients with chronic disease. This care transition takes place during adolescence; a period of psychological upheavals and adaptations of family roles. During this period, medication adherence is non-optimal and absenteeism at medical appointments is high. Sickle cell disease (SCD) is the first genetic disease detected in France. It is chronic disease characterized by frequent painful vaso-occlusive crises (VOC) requiring emergency hospitalization when they are severe. Other serious complications are acute chest syndromes (ACS) and stroke. In order to improve the health status of teenagers with sickle cell disease, it is necessary to anticipate this care transition and to involve the pediatric and adult sectors. The biopsychosocial health approach and the Social-Ecological Model of Adolescent and Young Adult

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📋 Eligibility rules (as published)
Inclusion Criteria: For patients : * Age: 16-17 years, * With major sickle cell syndrome, defined by hemoglobinopathy of homozygosity SS, or double heterozygosity SC or Sβ-thalassemia, * Benefiting from social insurance of the type "Affection of long duration" (ALD). For family members : * Included children's parents or legal representatives, * Accepting to participate in the study and having signed the informed consent. Exclusion Criteria: * Presenting a cognitive or psychiatric disorder known and major that may hinder interventions or evaluation, the judgment of the investigator, and / or having a family history with this type of disorders, * Cured of SCD by an allograft of hematopoietic stem cells.
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What it tests

  • pediatric-adult care transition program
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Where

8 sites
CHU de Fort de France
Fort-de-France-La Martinique, France
Centre Hospitalier Intercommunal de Creteil
Créteil, France
Hôpital Mondor
Créteil, France
Hôpital Bicêtre
Le Kremlin-Bicêtre, France
Hospices Civils de Lyon
Lyon, France
Hôpital Européen Georges Pompidou
Paris, France
Hôpital Necker
Paris, France
Centre Hospitalier de Pontoise
Pontoise, France
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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