[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"anemia-due-to-membrane-defect\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:anemia-due-to-membrane-defect":31},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,52],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":18,"targetDuration":4,"studyType":21,"phases":4,"briefSummary":22,"conditions":23,"keywords":33,"overallStatus":39,"whyStopped":4,"lastUpdateSubmitDate":40,"lastUpdatePostDateStruct":41,"startDateStruct":44,"completionDateStruct":46,"leadSponsor":48,"locationsCount":51},"100608787","integrative-diagnosis-for-scd-and-other-rads-100608787",false,"NCT07206095","Integrative Diagnosis for SCD and Other RADs","Integrative Diagnosis of Sickle Cell Disease (SCD) and Other Rare Anemia Disorders (RADs) for Personalized Medicine","INTEGRA","Inclusion Criteria:\n\n* Patients sustaining a confirmed or suspected diagnosis of an hereditary rare hemolytic anemia:\n* Sickle cell disease\n* Thalassemic syndromes\n* Congenital dyserythropoietic anemia\n* Enzymopathy\n* Unstable Hemoblogin \u002F Altered oxygen affinity\n* Hereditary stomatocytosis\n* Hereditary pyropoikilocytosis\n* Hereditary spherocytosis with severe anemia (\\\u003C8 g\u002FdL) or inconclusive diagnosis:\n* Patient with chronic hemolytic anemia and red cell smear compatible, but with:\n* EMA binding test: inconclusive or negative\n* Genetic testing: no definitive diagnosis (VUS or no findings)\n* Not transplanted or undergoing gene therapy at the time of inclusion. Patients with graft failure without a new transplant may be included.\n\nExclusion Criteria:\n\n* Carrier traits in autosomal recessive hereditary anemias","ALL",{"count":19,"type":20},200,"ESTIMATED","OBSERVATIONAL","INTEGRA aims at enabling personalized medicine for RHADs patients by the establishment of an integrative diagnostic approach based on deep phenotypic and genetic characterization through combining new generation methodologies.",[24,25,26,27,28,29,30,31,32],"Sickle Cell Disease","Thalassaemia","Congenital Dyserythropoietic Anemia (CDA)","Enzyme Disorder; Anemia","Spherocytosis, Hereditary","Stomatocytosis","Hemoglobin Disorder","Anemia Due to Membrane Defect","Rare Anemia Disorders",[34,35,36,37,38],"SICKLE CELL DISEASE","RARE ANEMIA DISORDERS","PERSONALIZED MEDICINE","DIAGNOSIS","EKTACYTOMETRY","RECRUITING","2025-09-25",{"date":42,"type":43},"2025-10-03","ACTUAL",{"date":45,"type":43},"2020-11-13",{"date":47,"type":20},"2028-05",{"name":49,"class":50},"Hospital Universitari Vall d'Hebron Research Institute","OTHER",9,{"id":53,"slug":54,"hasResults":11,"nctId":55,"briefTitle":56,"officialTitle":57,"acronym":58,"eligibilityCriteria":59,"healthyVolunteers":11,"sex":17,"minAge":60,"maxAge":61,"enrollmentInfo":62,"targetDuration":64,"studyType":21,"phases":4,"briefSummary":65,"conditions":66,"keywords":74,"overallStatus":39,"whyStopped":4,"lastUpdateSubmitDate":83,"lastUpdatePostDateStruct":84,"startDateStruct":86,"completionDateStruct":88,"leadSponsor":90,"locationsCount":91},"100532484","radeep-multicenter-european-epidemiological-platform-for-patients-diagnosed-with-rare-anemia-disorders-rads-100532484","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","0 Years","100 Years",{"count":63,"type":20},32564,"15 Years","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.",[24,67,68,31,69,70,71,72,73],"Thalassemia","Hemolytic; Anemia, Hereditary, Due to Enzyme Disorder","CDA","Sideroblastic Anemia","Constitutional Aplastic Anemia","Iron Metabolism Disorders","Hereditary Anemia",[24,67,75,76,32,77,78,79,80,81,82],"Red Blood Cell","Rare Hematological Disease","Sickle Cell Disease and Related Diseases","Hemoglobinopathy","Beta-Thalassemia","Alpha-Thalassemia","Sickel Cell Anemia","Pyruvate Kinase Deficiency","2024-01-09",{"date":85,"type":43},"2024-01-19",{"date":87,"type":43},"2021-11-30",{"date":89,"type":20},"2036-11",{"name":49,"class":50},1]