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, Annexe 1
,
, Votre enfant est suivi, au sein du service de pédiatrie au CHM
, Nous allons modifier notre pratique selon les recommandations du Centre National de Référence (CNR) : la fréquence des transfusions va être augmentée dans le but d'éviter les conséquences à long terme de la maladie
, Nous réalisons une étude chez les enfants atteints de Béta-Thalassémie majeure
, Pourquoi cette étude ?
, Le Centre National de Référence des maladies rares des globules rouges préconise un seuil transfusionnel à 9.5-10.5 g/dl d'hémoglobine pré-transfusionnelle chez tous les enfants atteints de Béta-Thalassémie majeure
,
, Quel est l'objet de cette recherche ?
, L'objectif principal est d'évaluer l'impact de cette nouvelle pratique sur le plan organique
, Comment va se dérouler la recherche ?
, Afin d'obtenir un seuil transfusionnel satisfaisant, votre enfant devra bénéficier d'une augmentation du nombre des transfusions
il devra venir à l'hôpital de jour toutes les 2 semaines pour un bilan sanguin et une transfusion pendant au moins 6 semaines ,
intensification pourra être prolongée si le seuil pré-transfusionnel recommandé (9.5 à 10 ,
, Durant cette période votre enfant bénéficiera comme prévu d'une surveillance de la ferritine sanguine, de l'IRM hépatique et l'IRM cardiaque
, Si vous ne désirez pas que votre enfant prenne part à cette recherche, il continuera à bénéficier de la meilleure prise en charge médicale possible, conformément aux connaissances actuelles
, Nous vous remercions de votre participation
,
, Autorisation de mise sur le marché CGR: Culots de globules rouges CIHF: Concentration intra-hépatique en fer CHM: Centre hospitalier de Mayotte CRMR: Centre de Référence des Maladies Rares CSH: Cellules souches hématopoïétiques DFP, ALD: Affection longue durée AMM DEFERIPRONE DFO: DEFEROXAMINE DFX: DEFERASIROX EPP : Evaluation de Pratiques Profesionnelles HAS: Haute Autorité de Santé HbF
, HLA: Histocompability Leukocyte Antigen HPLC: High-Performance Liquid Chromatography IRM: Imagerie par Résonnance Magnétique PBH: Ponction-biopsie hépatique RCP : Réunion de concertation pluridisciplinaire SQUID: Superconducting QUantum Interference Device VHB: Virus de l'Hépatite B
, VHC: Virus de l'Hépatite C