[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100532484":3},{"organization":4,"armGroups":7,"interventions":26,"overallOfficials":31,"centralContacts":42,"locations":50,"responsibleParty":69,"collaborators":71,"id":78,"slug":79,"hasResults":80,"nctId":81,"briefTitle":82,"officialTitle":83,"acronym":84,"eligibilityCriteria":85,"healthyVolunteers":80,"sex":86,"minAge":87,"maxAge":88,"enrollmentInfo":89,"targetDuration":92,"studyType":93,"phases":10,"briefSummary":94,"conditions":95,"keywords":105,"overallStatus":52,"whyStopped":10,"lastUpdateSubmitDate":115,"lastUpdatePostDateStruct":116,"startDateStruct":119,"completionDateStruct":121,"leadSponsor":123,"locationsCount":124},{"fullName":5,"class":6},"Hospital Universitari Vall d'Hebron Research Institute","OTHER",[8,14,18,22],{"label":9,"type":10,"description":11,"interventionNames":12},"Sickle cell anaemia and other related sickle diseases",null,"Patients with sickle cell disease and related diseases in current regular follow-ups in European-Union health centers",[13],"Other: Data collection from EHR.",{"label":15,"type":10,"description":16,"interventionNames":17},"Thalassemia and related diseases","Patients with Thalassemia disease and related diseases in current regular follow-ups in European-Union health centers, stratified by age, gender, and\u002For variants\u002Ftype if applicable.",[13],{"label":19,"type":10,"description":20,"interventionNames":21},"Pyruvate Kinase Deficiency and related diseases","Patients with Pyruvate Kinase Deficiency and related diseases in current regular follow-ups in European-Union health centers, stratified by age, gender, and\u002For variants\u002Ftype if applicable.",[13],{"label":23,"type":10,"description":24,"interventionNames":25},"Red Blood Cell membrane disorders and related diseases","Patients with Reb Blood Cell membrane disorders and related diseases in current regular follow-ups in European-Union health centers, stratified by age, gender, and\u002For variants\u002Ftype if applicable.",[13],[27],{"type":6,"name":28,"description":29,"armGroupLabels":30,"otherNames":10},"Data collection from EHR.","Collection of clinical and laboratory data. Reviwe of the electronic health record",[19,23,9,15],[32,36,39],{"name":33,"affiliation":34,"role":35},"María del Mar Manú Pereira, PhD","Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR\u002FHUVH)","PRINCIPAL_INVESTIGATOR",{"name":37,"affiliation":38,"role":35},"Béatrice Gulbis, MD","Hôpital ERASME (ERASME)",{"name":40,"affiliation":41,"role":35},"Petros Kountouris, PhD","Cyprus Institute of Neurology and Genetics (CING)",[43,47],{"name":33,"role":44,"phone":45,"phoneExt":10,"email":46},"CONTACT","0034934893000","mar.manu@vhir.org",{"name":48,"role":44,"phone":45,"phoneExt":10,"email":49},"Victoria Gutiérrez Valle, Msc","victoria.gutierrez@vhir.org",[51],{"facility":34,"status":52,"city":53,"state":54,"zip":55,"country":56,"countryCode":57,"cosmosGeoPoint":58,"geoPoint":63,"contacts":64},"RECRUITING","Barcelona","Catalonia","08035","Spain","ES",{"type":59,"coordinates":60},"Point",[61,62],2.15899,41.38879,{"lat":62,"lon":61},[65,67],{"name":66,"role":44,"phone":45,"phoneExt":10,"email":46},"María del Mar Mañú Pereira, PhD",{"name":48,"role":44,"phone":68,"phoneExt":10,"email":49},"+34934893000",{"type":70,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[72,74,76],{"name":73,"class":6},"Erasme University Hospital",{"name":75,"class":6},"Cyprus Institute of Neurology and Genetics",{"name":77,"class":6},"EuroBloodNet Association","100532484","radeep-multicenter-european-epidemiological-platform-for-patients-diagnosed-with-rare-anemia-disorders-rads-100532484",false,"NCT06213402","RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)","A Retrospective\u002FProspective, Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs) With Clinical Significance.","RADeep","Inclusion Criteria:\n\n* Patients must meet all of the following criteria to be included in the RADeep Registry\n* Age from 0-100, both female and male\n* Diagnosed as RADs (SCD, THAL, PKD, and other RADs THAL according to ORPHANET classification)\n* Able and willing to provide written informed consent (patient or legal representative for minors)\n\nExclusion Criteria:\n\n* Patient or legal representative for minors unwilling or unable to give consent\n* Patients diagnosed with SCD or THAL (alpha-thalassaemia and beta-thalassaemia) traits or trait conditions for other recessive RADs","ALL","0 Years","100 Years",{"count":90,"type":91},32564,"ESTIMATED","15 Years","OBSERVATIONAL","Rare Anaemia Disorders (RADs) is a group of rare diseases characterized for presenting anaemia as the main clinical manifestation. Different medical entities classified as RADs by ORPHA classification are most of them chronic life threating disorders with many unmet needs for their proper clinical management creating an impact on European health systems. RADs present diagnostic challenges and their appropriate management requires from specialised multidisciplinary teams in Centers of expertise.\n\nAlthough there are some examples of well-established national registries on RADs in EU, the lack of recommendations for Rare disease registries implementation and the lack of standards for interoperability has led to the fragmentation or unavailability of data on prevalence, survival, main clinical manifestations or treatments in most of the European countries.",[96,97,98,99,100,101,102,103,104],"Sickle Cell Disease","Thalassemia","Hemolytic; Anemia, Hereditary, Due to Enzyme Disorder","Anemia Due to Membrane Defect","CDA","Sideroblastic Anemia","Constitutional Aplastic Anemia","Iron Metabolism Disorders","Hereditary Anemia",[96,97,106,107,108,109,110,111,112,113,114],"Red Blood Cell","Rare Hematological Disease","Rare Anemia Disorders","Sickle Cell Disease and Related Diseases","Hemoglobinopathy","Beta-Thalassemia","Alpha-Thalassemia","Sickel Cell Anemia","Pyruvate Kinase Deficiency","2024-01-09",{"date":117,"type":118},"2024-01-19","ACTUAL",{"date":120,"type":118},"2021-11-30",{"date":122,"type":91},"2036-11",{"name":5,"class":6},1]