[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100406187":3},{"organization":4,"outcomesModule":7,"designInfo":14,"detailedDescription":16,"studyPopulation":17,"armGroups":13,"interventions":13,"overallOfficials":18,"centralContacts":23,"locations":33,"responsibleParty":51,"collaborators":54,"id":60,"slug":13,"hasResults":61,"nctId":62,"briefTitle":63,"officialTitle":64,"acronym":13,"eligibilityCriteria":65,"healthyVolunteers":61,"sex":66,"minAge":13,"maxAge":13,"enrollmentInfo":67,"targetDuration":70,"studyType":71,"phases":13,"briefSummary":72,"conditions":73,"keywords":81,"overallStatus":35,"whyStopped":13,"lastUpdateSubmitDate":83,"lastUpdatePostDateStruct":84,"startDateStruct":87,"completionDateStruct":89,"leadSponsor":91,"locationsCount":92},{"fullName":5,"class":6},"Nemours Children's Clinic","OTHER",{"primaryOutcomes":8,"secondaryOutcomes":13,"otherOutcomes":13},[9],{"measure":10,"description":11,"timeFrame":12},"Characterization of the natural history of various forms of primordial dwarfism","Data will be collected at enrollment, and over time, to allow for analysis of associated concerns throughout the lifespan","5 years",null,{"allocation":13,"interventionModel":13,"interventionModelDescription":13,"primaryPurpose":13,"observationalModel":15,"timePerspective":6,"maskingInfo":13},"CASE_ONLY","The registry will enable detailed natural history studies of various forms of microcephalic primordial dwarfism as well as related conditions. The study team hopes that identification of risk factors will allow for preventative treatments and thus a better quality of life for individuals with these diagnoses.\n\nThis study is limited to chart review, after signed informed consent obtained. There will be no additional visits or time in clinic because of participation in this registry. This study involves only the collection and storage of data extracted from the medical record. Records that may be requested and reviewed as a part of this study include but may not be limited to: specialist evaluations, surgical reports, results of blood and urine tests, genetic testing, x-rays, CT\u002FMRI\u002FMRA imaging. There are no special procedures, visits, or expectations of the individual as a result of participation in this registry. No one will be asked to have any specific testing for the sole purposes of this research.","Any individual at any age with microcephalic primordial dwarfism or a closely related condition",[19],{"name":20,"affiliation":21,"role":22},"Angela Duker, MS","Nemours","PRINCIPAL_INVESTIGATOR",[24,29],{"name":25,"role":26,"phone":27,"phoneExt":13,"email":28},"Angela Duker, MS, CGC","CONTACT","302-651-4181","aduker@nemours.org",{"name":30,"role":26,"phone":31,"phoneExt":13,"email":32},"Emily Longenecker, BS","302-298-7978","emily.longenecker@nemours.org",[34],{"facility":21,"status":35,"city":36,"state":37,"zip":38,"country":39,"countryCode":40,"cosmosGeoPoint":41,"geoPoint":46,"contacts":47},"RECRUITING","Wilmington","Delaware","19803","United States","US",{"type":42,"coordinates":43},"Point",[44,45],-75.54659,39.74595,{"lat":45,"lon":44},[48,49,50],{"name":25,"role":26,"phone":27,"phoneExt":13,"email":28},{"name":30,"role":26,"phone":31,"phoneExt":13,"email":32},{"name":25,"role":22,"phone":13,"phoneExt":13,"email":13},{"type":22,"investigatorFullName":52,"investigatorTitle":53,"investigatorAffiliation":5,"oldNameTitle":13,"oldOrganization":13},"Angela Duker","Genetic Counselor\u002FCoordinator of Skeletal Dysplasia Program",[55,58],{"name":56,"class":57},"Potentials Foundation","UNKNOWN",{"name":59,"class":57},"Walking with Giants Foundation","100406187",false,"NCT04569149","Primordial Dwarfism Registry","Primordial Dwarfism Registry at Nemours Children's Hospital, Delaware","Inclusion Criteria:\n\n* Individuals with MOPDII, Meier-Gorlin syndrome, IMAGe syndrome, RNU4atac-opathies (MOPDI\u002FIII, Roifman syndrome, Lowry-Wood syndrome), LIG4 syndrome, and other classified as well as unclassified types of microcephalic primordial dwarfism and related conditions, as diagnosed by a medical provider, are eligible for this registry.\n\nExclusion Criteria:\n\n* individuals without microcephalic primordial dwarfism or closely related conditions","ALL",{"count":68,"type":69},200,"ESTIMATED","5 Years","OBSERVATIONAL","The goal of this registry is to collect information on individuals with forms of microcephalic primordial dwarfism as well as related conditions. The study team hopes to learn more about these conditions and improve the care of people with them by establishing this registry.",[74,75,76,77,78,79,80],"MOPDII","Meier-Gorlin Syndrome","Saul-Wilson Syndrome","Microcephalic Primordial Dwarfism","IMAGe Syndrome","RNU4atac-opathy (e.g MOPDI, Lowry-Wood Syndrome, and Roifman Syndrome)","LIG4 Syndrome",[82],"microcephalic primordial dwarfism","2025-09-25",{"date":85,"type":86},"2025-10-01","ACTUAL",{"date":88,"type":86},"2008-03-11",{"date":90,"type":69},"2030-01-01",{"name":5,"class":6},1]