[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100625145":3},{"organization":4,"armGroups":7,"interventions":13,"overallOfficials":18,"centralContacts":23,"locations":29,"responsibleParty":356,"collaborators":10,"id":358,"slug":359,"hasResults":360,"nctId":361,"briefTitle":362,"officialTitle":362,"acronym":363,"eligibilityCriteria":364,"healthyVolunteers":360,"sex":365,"minAge":366,"maxAge":367,"enrollmentInfo":368,"targetDuration":10,"studyType":371,"phases":10,"briefSummary":372,"conditions":373,"keywords":375,"overallStatus":381,"whyStopped":10,"lastUpdateSubmitDate":382,"lastUpdatePostDateStruct":383,"startDateStruct":386,"completionDateStruct":388,"leadSponsor":390,"locationsCount":391},{"fullName":5,"class":6},"Assistance Publique Hopitaux De Marseille","OTHER",[8],{"label":9,"type":10,"description":10,"interventionNames":11},"adolescents with severe hemophilia who participated in the TRANSHEMO project",null,[12],"Other: questionnaires",[14],{"type":6,"name":15,"description":16,"armGroupLabels":17,"otherNames":10},"questionnaires","Participants will have questionnaires",[9],[19],{"name":20,"affiliation":21,"role":22},"François Cremieux","AP-HM","STUDY_DIRECTOR",[24],{"name":25,"role":26,"phone":27,"phoneExt":10,"email":28},"Noémie Resseguier, MD","CONTACT","0033491324272","noemie.resseguier@univ-amu.fr",[30,47,60,73,86,99,112,125,138,151,164,177,190,203,216,229,242,255,265,278,291,304,317,330,343],{"facility":31,"status":10,"city":32,"state":33,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":36,"geoPoint":41,"contacts":42},"CHU La Reunion","Saint-Denis","La Réunion","France","FR",{"type":37,"coordinates":38},"Point",[39,40],2.35387,48.93564,{"lat":40,"lon":39},[43],{"name":44,"role":26,"phone":45,"phoneExt":10,"email":46},"Stephane VANDERBECKEN","0033262906246","stephane.vanderbecken@chu-reunion.fr",{"facility":48,"status":10,"city":49,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":50,"geoPoint":54,"contacts":55},"CH Annecy - St Julien","Annecy",{"type":37,"coordinates":51},[52,53],6.12565,45.90878,{"lat":53,"lon":52},[56],{"name":57,"role":26,"phone":58,"phoneExt":10,"email":59},"Claire REYNES","0033450636608","creynes@ch-annecygenevois.fr",{"facility":61,"status":10,"city":62,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":63,"geoPoint":67,"contacts":68},"Chu de Bordeaux","Bordeaux",{"type":37,"coordinates":64},[65,66],-0.58046,44.84124,{"lat":66,"lon":65},[69],{"name":70,"role":26,"phone":71,"phoneExt":10,"email":72},"Sabine-Marie CASTET","0033556794879","sabine-marie.castet@chu-bordeaux.fr",{"facility":74,"status":10,"city":75,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":76,"geoPoint":80,"contacts":81},"Chu de Caen","Caen",{"type":37,"coordinates":77},[78,79],-0.35912,49.18585,{"lat":79,"lon":78},[82],{"name":83,"role":26,"phone":84,"phoneExt":10,"email":85},"Yohann REPESSE","0033231064849","repesse-y@chu-caen.fr",{"facility":87,"status":10,"city":88,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":89,"geoPoint":93,"contacts":94},"Centre hospitalier Métropole Savoie","Chambéry",{"type":37,"coordinates":90},[91,92],5.92079,45.56628,{"lat":92,"lon":91},[95],{"name":96,"role":26,"phone":97,"phoneExt":10,"email":98},"Romain JAILLER","0033479966183","romain.jailler@ch-metropole-savoie.fr",{"facility":100,"status":10,"city":101,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":102,"geoPoint":106,"contacts":107},"CHU Clermont-Ferrand","Clermont-Ferrand",{"type":37,"coordinates":103},[104,105],3.08682,45.77969,{"lat":105,"lon":104},[108],{"name":109,"role":26,"phone":110,"phoneExt":10,"email":111},"Aurelien LEBRETON","0033800800065","alebreton@chu-clermontferrand.fr",{"facility":113,"status":10,"city":114,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":115,"geoPoint":119,"contacts":120},"Chu de Dijon","Dijon",{"type":37,"coordinates":116},[117,118],5.01391,47.31344,{"lat":118,"lon":117},[121],{"name":122,"role":26,"phone":123,"phoneExt":10,"email":124},"Fabienne GENRE VOLOT","0033380293257","fabienne.volot@chu-dijon.fr",{"facility":126,"status":10,"city":127,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":128,"geoPoint":132,"contacts":133},"Chu de Grenoble","Grenoble",{"type":37,"coordinates":129},[130,131],5.71479,45.17869,{"lat":131,"lon":130},[134],{"name":135,"role":26,"phone":136,"phoneExt":10,"email":137},"Claire BARRO","0033476765487","CBarro@chu-grenoble.fr",{"facility":139,"status":10,"city":140,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":141,"geoPoint":145,"contacts":146},"CHRU de Lille","Lille",{"type":37,"coordinates":142},[143,144],3.05512,50.63391,{"lat":144,"lon":143},[147],{"name":148,"role":26,"phone":149,"phoneExt":10,"email":150},"Mélanie DANIEL","0033320444845","melanie.daniel@chu-lille.fr",{"facility":152,"status":10,"city":153,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":154,"geoPoint":158,"contacts":159},"CHU Limoges","Limoges",{"type":37,"coordinates":155},[156,157],1.24759,45.83362,{"lat":157,"lon":156},[160],{"name":161,"role":26,"phone":162,"phoneExt":10,"email":163},"Thomas LAUVRAY","0033555056801","thomas.lauvray@chu-limoges.fr",{"facility":165,"status":10,"city":166,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":167,"geoPoint":171,"contacts":172},"Hospices Civils de Lyon","Lyon",{"type":37,"coordinates":168},[169,170],4.84789,45.74906,{"lat":170,"lon":169},[173],{"name":174,"role":26,"phone":175,"phoneExt":10,"email":176},"Sandrine MEUNIER","0033472118810","sandrine.meunier@chu-lyon.fr",{"facility":178,"status":10,"city":179,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":180,"geoPoint":184,"contacts":185},"Assistance publique - Hôpitaux de Marseille","Marseille",{"type":37,"coordinates":181},[182,183],5.38107,43.29695,{"lat":183,"lon":182},[186],{"name":187,"role":26,"phone":188,"phoneExt":10,"email":189},"Hervé CHAMBOST","033491386776","herve.chambost@ap-hm.fr",{"facility":191,"status":10,"city":192,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":193,"geoPoint":197,"contacts":198},"CH Montmorency","Montmorency",{"type":37,"coordinates":194},[195,196],2.3434,48.98826,{"lat":196,"lon":195},[199],{"name":200,"role":26,"phone":201,"phoneExt":10,"email":202},"Abel HASSOUN","0033134066954","abel.hassoun@ch-simoneveil.fr",{"facility":204,"status":10,"city":205,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":206,"geoPoint":210,"contacts":211},"CHU Montpellier","Montpellier",{"type":37,"coordinates":207},[208,209],3.87635,43.61093,{"lat":209,"lon":208},[212],{"name":213,"role":26,"phone":214,"phoneExt":10,"email":215},"Christine BIRON-ANDREANI","0033467337771","c-biron@chu-montpellier.fr",{"facility":217,"status":10,"city":218,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":219,"geoPoint":223,"contacts":224},"Chu de Nancy","Nancy",{"type":37,"coordinates":220},[221,222],6.18496,48.68439,{"lat":222,"lon":221},[225],{"name":226,"role":26,"phone":227,"phoneExt":10,"email":228},"Birgit FROTSCHER","0033383153784","b.frotscher@chu-nancy.fr",{"facility":230,"status":10,"city":231,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":232,"geoPoint":236,"contacts":237},"CHU Nantes","Nantes",{"type":37,"coordinates":233},[234,235],-1.55336,47.21725,{"lat":235,"lon":234},[238],{"name":239,"role":26,"phone":240,"phoneExt":10,"email":241},"Marc TROSSAËRT","0033240087468","marc.trossaert@chu-nantes.fr",{"facility":243,"status":10,"city":244,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":245,"geoPoint":249,"contacts":250},"AP-HP (Hôpital Kremlin Bicetre)","Paris",{"type":37,"coordinates":246},[247,248],2.3488,48.85341,{"lat":248,"lon":247},[251],{"name":252,"role":26,"phone":253,"phoneExt":10,"email":254},"Roseline D'OIRON","033145212862","roseline.doiron@aphp.fr",{"facility":256,"status":10,"city":244,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":257,"geoPoint":259,"contacts":260},"AP-HP (Hôpital NECKER)",{"type":37,"coordinates":258},[247,248],{"lat":248,"lon":247},[261],{"name":262,"role":26,"phone":263,"phoneExt":10,"email":264},"Laurent FRENZEL","0033144495273","laurent.frenzel@aphp.fr",{"facility":266,"status":10,"city":267,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":268,"geoPoint":272,"contacts":273},"CHU Reims","Reims",{"type":37,"coordinates":269},[270,271],4.02853,49.26526,{"lat":271,"lon":270},[274],{"name":275,"role":26,"phone":276,"phoneExt":10,"email":277},"Valérie POULLE","0033326784652","vproulle@chu-reims.fr",{"facility":279,"status":10,"city":280,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":281,"geoPoint":285,"contacts":286},"CHU de Rennes","Rennes",{"type":37,"coordinates":282},[283,284],-1.67431,48.11109,{"lat":284,"lon":283},[287],{"name":288,"role":26,"phone":289,"phoneExt":10,"email":290},"Benoît GUILLET","0033299282410","benoit.guillet@chu-rennes.fr",{"facility":292,"status":10,"city":293,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":294,"geoPoint":298,"contacts":299},"CHU de Rouen","Rouen",{"type":37,"coordinates":295},[296,297],1.09932,49.44313,{"lat":297,"lon":296},[300],{"name":301,"role":26,"phone":302,"phoneExt":10,"email":303},"Pierre CHAMOUNI","0033232880249","pierre.chamouni@chu-rouen.fr",{"facility":305,"status":10,"city":306,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":307,"geoPoint":311,"contacts":312},"CHU St Etienne","Saint-Etienne",{"type":37,"coordinates":308},[309,310],4.39,45.43389,{"lat":310,"lon":309},[313],{"name":314,"role":26,"phone":315,"phoneExt":10,"email":316},"Brigitte TARDY","0033477127863","brigitte.tardy@chu-st-etienne.fr",{"facility":318,"status":10,"city":319,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":320,"geoPoint":324,"contacts":325},"CHU Strasbourg","Strasbourg",{"type":37,"coordinates":321},[322,323],7.74553,48.58392,{"lat":323,"lon":322},[326],{"name":327,"role":26,"phone":328,"phoneExt":10,"email":329},"Dominique DESPREZ FLOR","0033388128371","dominique.desprez@chru-strasbourg.fr",{"facility":331,"status":10,"city":332,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":333,"geoPoint":337,"contacts":338},"CHU Toulouse","Toulouse",{"type":37,"coordinates":334},[335,336],1.44367,43.60426,{"lat":336,"lon":335},[339],{"name":340,"role":26,"phone":341,"phoneExt":10,"email":342},"Caroline OUDOT-CHALLARD","0033561776803","oudotchallard.c@chu-toulouse.fr",{"facility":344,"status":10,"city":345,"state":10,"zip":10,"country":34,"countryCode":35,"cosmosGeoPoint":346,"geoPoint":350,"contacts":351},"CH Versailles","Versailles",{"type":37,"coordinates":347},[348,349],2.13424,48.80359,{"lat":349,"lon":348},[352],{"name":353,"role":26,"phone":354,"phoneExt":10,"email":355},"Emmanuelle DE RAUCOURT","0033139638745","ederaucourt@ch-versailles.fr",{"type":357,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100625145","determinants-and-consequences-of-the-transition-to-adulthood-for-adolescents-with-severe-haemophilia-transhemo-2-an-ancillary-study-to-the-transhemo-project-100625145",false,"NCT07418827","Determinants and Consequences of the Transition to Adulthood for Adolescents With Severe Haemophilia: TRANSHEMO 2, an Ancillary Study to the TRANSHEMO Project","TRANSHEMO2","Inclusion Criteria:\n\n* Young adults who participated in the TRANSHEMO project during adolescence and who are currently aged 20-29 years;\n* Young adults with severe haemophilia (haemophilia A or B);\n* Young adults registered in the FranceCoag registry;\n* Young adults who have received the participant information sheet for the TRANSHEMO 2 project;\n* Young adults who did not object to participation in the present study.\n\nExclusion Criteria:\n\n* patients with comprehension difficulties;\n* patients who are unable to read and\u002For write;\n* patients who express opposition to participation in this study.","ALL","20 Years","29 Years",{"count":369,"type":370},75,"ESTIMATED","OBSERVATIONAL","Haemophilia is a rare genetic disorder which, in its severe form and in the absence of treatment, can be life-threatening. Since the 1960s and the introduction of coagulation factor concentrates, the life expectancy of people with haemophilia has increased rapidly. Today, for most affected individuals, the disease is experienced as a chronic condition.\n\nThe transition process enabling adolescents and young adults (AYA) with a chronic disease to move into adult life can be complex, as they must face all the changes experienced by AYA in general, combined with issues related to their chronic condition and its management.\n\nA successful transition involves a transfer of responsibility from parents to AYA regarding the management of their health condition, as well as the acquisition by AYA of knowledge, skills and autonomy. A difficult transition may lead to decreased adherence to follow-up or treatment, deterioration of overall health status and\u002For quality of life, or difficulties in entering adult life.\n\nIn this context, the national cross-sectional study TRANSHEMO was initiated in 2017. Its objective was to compare adherence to healthcare management between two groups of AYA with severe haemophilia (adolescents \\[for whom the transition is ongoing\\] versus young adults \\[for whom the transition may have been completed\\]), and to identify the determinants of this adherence. The results showed that young adults had a lower adherence rate than adolescents (82.2% vs. 61.2%, p\\\u003C0.001). Among the determinants studied, being a young adult, having repeated at least one school year, and presenting psychological and emotional difficulties were factors that had a negative effect on adherence to healthcare management. However, the cross-sectional nature of the study represents a limitation that restricts causal inference. Complementing this project with a longitudinal study would address this limitation.\n\nThe results obtained from this new study (TRANSHEMO 2) may contribute to the literature by providing insights into both the determinants of sustained adherence to healthcare management among adolescents with severe haemophilia who become young adults, and the associations between these determinants.\n\nThe longitudinal design of the project will allow the establishment of a higher level of causal inference between the maintenance of adherence during the transition to adult life and its determinants, which represents a major epidemiological strength. Moreover, results addressing the issue of transition in the context of chronic diseases and derived from longitudinal studies remain scarce, making the findings of this project particularly original. Finally, haemophilia, a relatively frequent condition among rare diseases, could represent an interesting model for understanding the impact of transition in this type of pathology.\n\nStudy hypothesis The extent of the reduction in adherence to healthcare during the transition process, and\u002For the determinants of the maintenance of adherence identified in the longitudinal TRANSHEMO 2 project, may differ from those highlighted in the original cross-sectional TRANSHEMO project.\n\nSpecific aims\n\nMain objective:\n\nTo compare the rate of adherence to healthcare among adolescents who participated in the TRANSHEMO project, using data collected during the original TRANSHEMO study when they were adolescents (before transition) and data to be collected as part of the TRANSHEMO 2 study when they have become young adults (after transition).\n\nSecondary objective:\n\nTo identify the determinants of the maintenance of this adherence and the associations between these determinants, within the framework of a longitudinal study.",[374],"Haemophilia",[376,377,378,379,380],"haemophilia","young adult","cohort study","genetic disorder","healthcare management","NOT_YET_RECRUITING","2026-02-11",{"date":384,"type":385},"2026-02-18","ACTUAL",{"date":387,"type":370},"2026-02",{"date":389,"type":370},"2027-06",{"name":5,"class":6},25]