[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100535343":3},{"organization":4,"armGroups":7,"interventions":34,"overallOfficials":39,"centralContacts":53,"locations":61,"responsibleParty":81,"collaborators":83,"id":87,"slug":88,"hasResults":89,"nctId":90,"briefTitle":91,"officialTitle":91,"acronym":92,"eligibilityCriteria":93,"healthyVolunteers":89,"sex":94,"minAge":10,"maxAge":95,"enrollmentInfo":96,"targetDuration":99,"studyType":100,"phases":10,"briefSummary":101,"conditions":102,"keywords":115,"overallStatus":64,"whyStopped":10,"lastUpdateSubmitDate":123,"lastUpdatePostDateStruct":124,"startDateStruct":127,"completionDateStruct":129,"leadSponsor":131,"locationsCount":132},{"fullName":5,"class":6},"Hospital Universitari Vall d'Hebron Research Institute","OTHER",[8,14,18,22,26,30],{"label":9,"type":10,"description":11,"interventionNames":12},"Inherited Rare Anaemia Disorders, including inherited Bone Marrow Failures",null,"Patients with Inherited Rare Anemia Disorders, including inherited Bone Marrow Failures, stratified by gender, age, and\u002For variants\u002Ftypes if applicable.",[13],"Other: Collection of clinical and laboratory data from EHR.",{"label":15,"type":10,"description":16,"interventionNames":17},"Acquired Bone Marrow Failures","Patients with Acquired Bone Marrow Failures, stratified by gender, age, and\u002For variants\u002Ftypes if applicable.",[13],{"label":19,"type":10,"description":20,"interventionNames":21},"Rare bleeding-coagulation disorders and related diseases","Patients with Rare bleeding-coagulation disorders and related diseases, stratified by gender, age, and\u002For variants\u002Ftypes if applicable.",[13],{"label":23,"type":10,"description":24,"interventionNames":25},"Hemochromatosis and other rare genetic disorders of iron metabolism and heme synthesis","Patients with hemochromatosis and other rare genetic disorders of iron metabolism and heme synthesis, stratified by gender, age, and\u002For variants\u002Ftypes if applicable.",[13],{"label":27,"type":10,"description":28,"interventionNames":29},"Myeloid malignancies","Patients with Myeloid malignancies, stratified by gender, age, and\u002For variants\u002Ftypes if applicable.",[13],{"label":31,"type":10,"description":32,"interventionNames":33},"Lymphoid malignancies","Patients with lymphoid malignancies, stratified by gender, age, and\u002For variants\u002Ftypes if applicable.",[13],[35],{"type":6,"name":36,"description":37,"armGroupLabels":38,"otherNames":10},"Collection of clinical and laboratory data from EHR.","Observational sutdy",[15,23,9,31,27,19],[40,44,47,50],{"name":41,"affiliation":42,"role":43},"María del Mar Manú Pereira, PhD","Vall d'Hebron Institut de Recerca \u002F University Hospital Vall d'Hebron (VHIR \u002F HUVH)","PRINCIPAL_INVESTIGATOR",{"name":45,"affiliation":46,"role":43},"Béatrice Gulbis, MD","Hôpital ERASME \u002F ULB (ERASME_ULB)",{"name":48,"affiliation":49,"role":43},"Petros Kountouris, PhD","Cyprus Institute of Neurology and Genetics (CING)",{"name":51,"affiliation":52,"role":43},"Pierre Fenaux, MD","Assistance Publique - Hopitaux de Paris (AP-HP)",[54,58],{"name":41,"role":55,"phone":56,"phoneExt":10,"email":57},"CONTACT","+34934893000","mar.manu@vhir.org",{"name":59,"role":55,"phone":56,"phoneExt":10,"email":60},"Victoria Gutiérrez Valle, Biotech","victoria.gutierrez@vhir.org",[62],{"facility":63,"status":64,"city":65,"state":66,"zip":67,"country":68,"countryCode":69,"cosmosGeoPoint":70,"geoPoint":75,"contacts":76},"María del Mar","RECRUITING","Barcelona","Catalonia","08035","Spain","ES",{"type":71,"coordinates":72},"Point",[73,74],2.15899,41.38879,{"lat":74,"lon":73},[77,80],{"name":78,"role":55,"phone":79,"phoneExt":10,"email":57},"María del Mar Mañú Pereira, Biologist","0034934893000",{"name":59,"role":55,"phone":56,"phoneExt":10,"email":60},{"type":82,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[84],{"name":85,"class":86},"ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases","UNKNOWN","100535343","european-rare-blood-disorders-platform-enrol-100535343",false,"NCT06250595","European Rare Blood Disorders Platform (ENROL)","ENROL","Inclusion Criteria:\n\n* Patients must meet all of the following criteria to be included in the ENROL Registry\n* Age from 0-100, both female and male\n* Diagnosed as RHDs according to ORPHANET classification\n* Able and willing to provide written informed consent (patient or legal representative for minors) if needed according to national legislation.\n\nExclusion Criteria:\n\n* Patients diagnosed as traits or trait conditions for other recessive RHDs","ALL","100 Years",{"count":97,"type":98},37090,"ESTIMATED","15 Years","OBSERVATIONAL","ENROL, the European Rare Blood Disorders Platform has been conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on Rare Hematological Diseases (RHDs). ENROL aims at avoiding fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform.\n\nENROL's principle is to maximize public benefit from data on RHDs opened up through the platform with the only restriction needed to guarantee patient rights and confidentiality, in agreement with EU regulations for cross-border sharing of personal data.\n\nAccordingly, ENROL will map the EU-level demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations, and treatments in order to obtain epidemiological figures and identify trial cohorts for basic and clinical research. To this aim, ENROL will connect and facilitate the upgrading of existing RHD registries, while promoting the building of new ones when \u002F where lacking. Target-driven actions will be carried out in collaboration with EURORDIS for educating patients and families about the benefits of enrolment in such registries, including different cultural and linguistic strategies.\n\nThe standardized collection and monitoring of disease-specific healthcare outcomes through the ENROL user-friendly platform will determine how specialized care is delivered, where are the gaps in diagnosis, care, or treatment and where best to allocate financial, technical, or human resources.\n\nMoreover, it will allow for promoting research, especially for those issues that remain unanswered or sub-optimally addressed by the scientific community; furthermore, it will allow promoting clinical trials for new drugs. ENROL will enable the generation of evidence for better healthcare for RHD patients in the EU as the ultimate goal.\n\nENROL officially started on 1st June 2020 with a duration of 36 months. ENROL is co-funded by the Health Programme of the European Union under the call for proposals HP-PJ-2019 on Rare disease registries for the European Reference Networks. GA number 947670",[103,104,105,106,107,108,109,110,111,112,113,114],"Anemia","Bone Marrow Failure","Bleeding Disorder","Iron Metabolism Disorders","Myeloma","Lymphoid Neoplasm","Myeloma, Malignant","Leukemia","Anemia, Sickle Cell","Thalassemia","Blood Cancer","Red Cell Membrane and Enzyme Abnormalities",[103,104,116,117,118,119,120,110,121,112,122],"Bleeding disorder","Iron metabolism disorder","Myeloid","Lymphoid","Blood cancer","Red Cell membrane and Enzyme Abnormalities","Sickle Cell Disease","2024-02-06",{"date":125,"type":126},"2024-02-09","ACTUAL",{"date":128,"type":126},"2022-07-01",{"date":130,"type":98},"2037-07",{"name":5,"class":6},1]