Program to help teenagers with sickle cell disease transition to adult care

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This program aims to improve the transition of care for adolescents with sickle cell disease as they move from pediatric to adult healthcare services. It addresses the challenges faced during this critical period, including medication adherence and appointment attendance. By utilizing a biopsychosocial health approach and the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition (SMART), the program integrates both clinical and psychosocial support to enhance health outcomes. The intervention involves collaboration between pediatric and adult healthcare sectors to ensure a smoother transition for patients.

Why it matters

Who can join: the full rules

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.

Where it's running

• Hospices Civils de Lyon
  Lyon, France Recruiting
• CHU de Fort de France
  Fort-de-France-La Martinique, La Martinique, France Not yet recruiting
• Centre Hospitalier Intercommunal de Creteil
  Créteil, France Not yet recruiting
• Hôpital Mondor
  Créteil, France Not yet recruiting
• Hôpital Bicêtre
  Le Kremlin-Bicêtre, France Not yet recruiting
• Hôpital Européen Georges Pompidou
  Paris, France Not yet recruiting

Study contacts

• Study coordinator: Alexandra GAUTHIER VASSEROT, DR
• Email: alexandra.gauthier@ihope.fr
• Phone: 04 69 16 65 72

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Newborn Sickle Cell Screening in Mozambique

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• Optimizing Hydroxyurea in Children with Sickle Cell in Africa

  This study tests whether raising hydroxyurea to a maximum tolerated dose is safe and beneficial for Ugandan children with sickle cell anemia already taking a fixed daily dose.

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• Hematopoietic stem cell editing to treat sickle cell disease

  This study tests whether a patient’s own blood stem cells can be edited to remove the sickle cell triggering gene and then returned to the patient.

  Recruiting Phase 1 Boston Children's Hospital · Boston, Massachusetts · NCT07708350

• Virtual reality options to help with VOC pain in adults with SCD

  This study tests whether headset-based virtual reality can help reduce pain for adults with sickle cell disease during vaso-occlusive crises treated in an infusion center.

  Recruiting University of Maryland, Baltimore · Baltimore, Maryland · NCT07674277

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.