[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100492878":3},{"organization":4,"outcomesModule":7,"designInfo":21,"detailedDescription":24,"studyPopulation":25,"armGroups":26,"interventions":20,"overallOfficials":42,"centralContacts":47,"locations":55,"responsibleParty":247,"collaborators":20,"id":250,"slug":20,"hasResults":251,"nctId":252,"briefTitle":253,"officialTitle":253,"acronym":254,"eligibilityCriteria":255,"healthyVolunteers":251,"sex":256,"minAge":20,"maxAge":257,"enrollmentInfo":258,"targetDuration":261,"studyType":262,"phases":20,"briefSummary":263,"conditions":264,"keywords":268,"overallStatus":58,"whyStopped":20,"lastUpdateSubmitDate":274,"lastUpdatePostDateStruct":275,"startDateStruct":278,"completionDateStruct":280,"leadSponsor":282,"locationsCount":283},{"fullName":5,"class":6},"Children's National Research Institute","OTHER",{"primaryOutcomes":8,"secondaryOutcomes":13,"otherOutcomes":20},[9],{"measure":10,"description":11,"timeFrame":12},"Event-free Survival","The primary outcome measure will be time from diagnosis to an event, defined as the occurrence of progression or recurrence of the disease, occurrence of a second malignant neoplasm, or death from any cause. Each cohort will be analyzed separately.","10 years",[14,17],{"measure":15,"description":16,"timeFrame":12},"Molecular characterization","To determine molecular characteristics of each cohort using somatic and germline SNV calling, methylation profiling, fusion calling and gene expression profiling. Molecular findings will be correlated with clinical characteristics to identify risk factors and subgroup-specific therapeutic susceptibilities.",{"measure":18,"description":19,"timeFrame":12},"Radiological characterization","To analyze conventional and advanced imaging findings (including diffusion weighted imaging) of each cohort and correlate them with clinical, histopathology and molecular data (radiogenomics).",null,{"allocation":20,"interventionModel":20,"interventionModelDescription":20,"primaryPurpose":20,"observationalModel":22,"timePerspective":23,"maskingInfo":20},"COHORT","PROSPECTIVE","The International Rare Brain Tumor Registry (IRBTR) is a prospective observational study that will collect tumor samples and matched clinical and radiological data to better understand the outcomes of patients with rare brain tumors in particular: CNS sarcoma, BCOR, MN-1 altered tumors, PLAG\u002FL1, and other rare or unclassified rare brain tumors.\n\nData collected include demographics, disease characteristics, treatment information, radiological imaging, and biospecimen collection if available ( tumor tissues Patients will be followed longitudinally to obtain outcome data. Data collection will continue for approximately 10 years.","The study population will include patients who have completed the informed consent process and are \\\u003C= to 45 years of age at diagnosis of the following: CNS Sarcoma, BCOR-altered tumor, Astroblastoma\u002FMNI-1 altered tumors, histologically ambiguous\u002Funclassifiable brain tumor, rare brain tumor. Patients from anywhere in the world are eligible for enrollment.",[27,30,33,36,39],{"label":28,"type":20,"description":29,"interventionNames":20},"CNS Sarcoma","Patients diagnosed with Central nervous system (CNS) sarcomas",{"label":31,"type":20,"description":32,"interventionNames":20},"BCOR-altered","Patients diagnosed with tumors characterized by alterations in the BCOR gene.",{"label":34,"type":20,"description":35,"interventionNames":20},"Astroblastoma\u002FMN-1- altered","Patients diagnosed with Astroblastomas\u002FMN-1 alterations",{"label":37,"type":20,"description":38,"interventionNames":20},"Unclassifiable tumors","Patients diagnosed with histologically ambiguous tumors or tumors that fail to classify with the current diagnostic methods.",{"label":40,"type":20,"description":41,"interventionNames":20},"Other Rare Brain tumors","Patients diagnosed with other rare brain tumors that do not meet the criteria for cohorts 1-4.",[43],{"name":44,"affiliation":45,"role":46},"Adriana Fonseca, MD","afonsecash@childrensnational.org","PRINCIPAL_INVESTIGATOR",[48,51],{"name":44,"role":49,"phone":50,"phoneExt":20,"email":45},"CONTACT","202-476-8399",{"name":52,"role":49,"phone":53,"phoneExt":20,"email":54},"Hope Lovell","202-476-3898","hlovell@childrensnational.org",[56,80,99,117,136,155,173,193,211,229],{"facility":57,"status":58,"city":59,"state":60,"zip":61,"country":62,"countryCode":63,"cosmosGeoPoint":64,"geoPoint":69,"contacts":70},"Children's Hospital Los Angeles","RECRUITING","Los Angeles","California","90027","United States","US",{"type":65,"coordinates":66},"Point",[67,68],-118.24368,34.05223,{"lat":68,"lon":67},[71,75,79],{"name":72,"role":49,"phone":73,"phoneExt":20,"email":74},"Nathan Robison, MD","323-361-4624","nrobison@chla.usc.edu",{"name":76,"role":49,"phone":77,"phoneExt":20,"email":78},"Eliana Romero","323-361-8957","eromero@chla.usc.edu",{"name":72,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":81,"status":58,"city":82,"state":60,"zip":83,"country":62,"countryCode":63,"cosmosGeoPoint":84,"geoPoint":88,"contacts":89},"University of California San Francisco","San Francisco","94158",{"type":65,"coordinates":85},[86,87],-122.41942,37.77493,{"lat":87,"lon":86},[90,94,98],{"name":91,"role":49,"phone":92,"phoneExt":20,"email":93},"Marie Jaeger-Krause, MD","4154763831","marie.jaeger-krause@ucsf.edu",{"name":95,"role":49,"phone":96,"phoneExt":20,"email":97},"Cammy Britts","(650)-796-8115","Cammy.Britts@ucsf.edu",{"name":91,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":100,"status":58,"city":101,"state":102,"zip":103,"country":62,"countryCode":63,"cosmosGeoPoint":104,"geoPoint":108,"contacts":109},"Children's National Hospital","Washington D.C.","District of Columbia","20010",{"type":65,"coordinates":105},[106,107],-77.03637,38.89511,{"lat":107,"lon":106},[110,112,113,114],{"name":44,"role":49,"phone":111,"phoneExt":20,"email":45},"202-476-3899",{"name":52,"role":49,"phone":53,"phoneExt":20,"email":54},{"name":44,"role":46,"phone":20,"phoneExt":20,"email":20},{"name":115,"role":116,"phone":20,"phoneExt":20,"email":20},"Roger J. Packer, MD","SUB_INVESTIGATOR",{"facility":118,"status":58,"city":119,"state":120,"zip":121,"country":62,"countryCode":63,"cosmosGeoPoint":122,"geoPoint":126,"contacts":127},"Ann & Robert H. Lurie Children's Hospital of Chicago","Chicago","Illinois","60611",{"type":65,"coordinates":123},[124,125],-87.65005,41.85003,{"lat":125,"lon":124},[128,132,135],{"name":129,"role":49,"phone":130,"phoneExt":20,"email":131},"Miriam Bornhorst, MD","2024762140","mbornhorst@luriechildrens.org",{"name":133,"role":49,"phone":20,"phoneExt":20,"email":134},"Kelly Bruno","kbruno@luriechildrens.org",{"name":129,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":137,"status":58,"city":138,"state":139,"zip":140,"country":62,"countryCode":63,"cosmosGeoPoint":141,"geoPoint":145,"contacts":146},"Akron Children's Hospital","Akron","Ohio","44308",{"type":65,"coordinates":142},[143,144],-81.51901,41.08144,{"lat":144,"lon":143},[147,151,154],{"name":148,"role":49,"phone":149,"phoneExt":20,"email":150},"Erin Wright, MD","3305438580","ewright@akronchildrens.org",{"name":152,"role":49,"phone":20,"phoneExt":20,"email":153},"Emily Blue","eblue@akronchildrens.org",{"name":148,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":156,"status":58,"city":157,"state":139,"zip":158,"country":62,"countryCode":63,"cosmosGeoPoint":159,"geoPoint":163,"contacts":164},"Cincinnati Children's Hospital Medical Center","Cincinnati","45229-3026",{"type":65,"coordinates":160},[161,162],-84.51439,39.12711,{"lat":162,"lon":161},[165,169,172],{"name":166,"role":49,"phone":167,"phoneExt":20,"email":168},"Scott Raskin, DO","(513) 636-4200","scott.raskin@cchmc.org",{"name":170,"role":49,"phone":20,"phoneExt":20,"email":171},"Cecilia Grizzell","Cecilia.Grizzell@cchmc.org",{"name":166,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":174,"status":58,"city":175,"state":20,"zip":176,"country":177,"countryCode":178,"cosmosGeoPoint":179,"geoPoint":183,"contacts":184},"Rambam Health Care Campus","Haifa","3525409","Israel","IL",{"type":65,"coordinates":180},[181,182],34.99928,32.81303,{"lat":182,"lon":181},[185,189,192],{"name":186,"role":49,"phone":187,"phoneExt":20,"email":188},"Liat Oren, MD","04-7774718","li_oren@rmc.gov.il",{"name":190,"role":49,"phone":20,"phoneExt":20,"email":191},"Hadar Aktin Moustcki","h_aktinmoustcki@rambam.health.gov.il",{"name":186,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":194,"status":58,"city":195,"state":20,"zip":196,"country":177,"countryCode":178,"cosmosGeoPoint":197,"geoPoint":201,"contacts":202},"Schneider Children's Medical Center- CLALIT Health Services","Petah Tikva","4920235",{"type":65,"coordinates":198},[199,200],34.88747,32.08707,{"lat":200,"lon":199},[203,207,210],{"name":204,"role":49,"phone":205,"phoneExt":20,"email":206},"Helen Toledano, MD","054-8885563","Helent@clalit.org.il",{"name":208,"role":49,"phone":20,"phoneExt":20,"email":209},"Tehila Tannin","tehilatan@clalit.org.il",{"name":204,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":212,"status":58,"city":213,"state":20,"zip":214,"country":177,"countryCode":178,"cosmosGeoPoint":215,"geoPoint":219,"contacts":220},"Dana-Dwek Children's Hospital- Tel Aviv Medical Center","Tel Aviv","6423906",{"type":65,"coordinates":216},[217,218],34.78057,32.08088,{"lat":218,"lon":217},[221,225,228],{"name":222,"role":49,"phone":223,"phoneExt":20,"email":224},"Yair Peled, MD","+97236974444","yairpe@tlvmc.gov.il",{"name":226,"role":49,"phone":20,"phoneExt":20,"email":227},"Ziva Rosenthal Galili","zivarg@tlvmc.gov.il",{"name":222,"role":46,"phone":20,"phoneExt":20,"email":20},{"facility":230,"status":58,"city":231,"state":20,"zip":232,"country":177,"countryCode":178,"cosmosGeoPoint":233,"geoPoint":237,"contacts":238},"The Sheba Medical Center","Tel Litwinsky","52621",{"type":65,"coordinates":234},[235,236],34.84588,32.05096,{"lat":236,"lon":235},[239,243,246],{"name":240,"role":49,"phone":241,"phoneExt":20,"email":242},"Michal Oren, MD, PhD","972-523-595718","michal@droren.co.il",{"name":244,"role":49,"phone":20,"phoneExt":20,"email":245},"Orit Savyon","orit.savyon@sheba.health.gov.il",{"name":240,"role":46,"phone":20,"phoneExt":20,"email":20},{"type":46,"investigatorFullName":248,"investigatorTitle":249,"investigatorAffiliation":5,"oldNameTitle":20,"oldOrganization":20},"Adriana Fonseca","Oncologist","100492878",false,"NCT05697874","International Rare Brain Tumor Registry","IRBTR","Inclusion Criteria:\n\n* Patients with a known or suspected CNS Sarcoma.\n* Patients with a known or suspected BCOR-altered brain tumor\n* Patients with a known or suspected Astroblastoma\u002FNM-1 altered brain tumor\n* Patients with known or suspected histologically ambiguous\u002Funclassifiable brain tumor\n* Patients with a known or suspected rare brain tumor.\n* Signed informed consent by patient\u002F parent or guardian (assent where applicable) to participate in the study.\n\nExclusion Criteria:\n\n* The patient has an extra-CNS primary tumor.\n* The patient is older than 46 years of age at diagnosis.\n* The patient or family is not willing to participate or does not sign informed consent.","ALL","45 Years",{"count":259,"type":260},5800,"ESTIMATED","10 Years","OBSERVATIONAL","The objective of the International Rare Brain Tumor Registry (IRBTR) is to better understand rare brain tumors through the collection of biospecimens and matched clinical data of children, adolescents, and young adult patients diagnosed with rare brain tumors.",[265,266,28,267],"Astroblastoma","BCOR ITD Sarcoma","Unclassified Tumor, Malignant",[269,270,271,272,273],"Rare Brain Tumor","Pediatric Brain Tumor Registry","Unclassifiable tumor","Pediatric Neuro-Oncology","Rare Disease","2026-03-26",{"date":276,"type":277},"2026-03-31","ACTUAL",{"date":279,"type":277},"2023-01-01",{"date":281,"type":260},"2033-12",{"name":5,"class":6},10]