[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100489284":3},{"organization":4,"armGroups":7,"interventions":31,"overallOfficials":10,"centralContacts":10,"locations":36,"responsibleParty":58,"collaborators":62,"id":72,"slug":73,"hasResults":74,"nctId":75,"briefTitle":76,"officialTitle":77,"acronym":10,"eligibilityCriteria":78,"healthyVolunteers":79,"sex":80,"minAge":81,"maxAge":10,"enrollmentInfo":82,"targetDuration":10,"studyType":85,"phases":10,"briefSummary":86,"conditions":87,"keywords":10,"overallStatus":38,"whyStopped":10,"lastUpdateSubmitDate":89,"lastUpdatePostDateStruct":90,"startDateStruct":93,"completionDateStruct":95,"leadSponsor":97,"locationsCount":98},{"fullName":5,"class":6},"King's College London","OTHER",[8,14,18,21,24,27],{"label":9,"type":10,"description":11,"interventionNames":12},"Positive NBS for SCID",null,"Parents whose baby was referred to an immunologist due their SCID screening result (minimum n= 10-25)",[13],"Other: SCID Screening",{"label":15,"type":10,"description":16,"interventionNames":17},"Normal NBS result","Parents who received a normal screening result (minimum n=10-25)",[13],{"label":19,"type":10,"description":20,"interventionNames":10},"False positive NBS result","Parents who have received a false positive result elsewhere in screening (minimum n=2-10)",{"label":22,"type":10,"description":23,"interventionNames":10},"CFSPID Designation","Parents who received a CFSPID result (minimum n=\\~10)",{"label":25,"type":10,"description":26,"interventionNames":10},"SCID via family history or clinical presentation","Parents whose baby was identified with SCID due to family history or clinical presentation (minimum n=10)",{"label":28,"type":10,"description":29,"interventionNames":30},"Parents whose babies have died","Parents who have received an abnormal screening result (T cell receptor excision circles (TRECs) or who were identified with SCID due to family history or clinical presentation and whose baby has subsequently died (n=\\~10)",[13],[32],{"type":6,"name":33,"description":34,"armGroupLabels":35,"otherNames":10},"SCID Screening","The addition of newborn bloodspot screening for severe combined immunodeficiency",[15,28,9],[37],{"facility":5,"status":38,"city":39,"state":10,"zip":40,"country":41,"countryCode":42,"cosmosGeoPoint":43,"geoPoint":48,"contacts":49},"RECRUITING","London","SE5 9PJ","United Kingdom","UK",{"type":44,"coordinates":45},"Point",[46,47],-0.12574,51.50853,{"lat":47,"lon":46},[50,55],{"name":51,"role":52,"phone":53,"phoneExt":10,"email":54},"Jane Chudleigh, PhD","CONTACT","+447977933204","jane.2.chudleigh@kcl.ac.uk",{"name":56,"role":52,"phone":10,"phoneExt":10,"email":57},"Pru Holder, MSc","pru.holder@kcl.ac.uk",{"type":59,"investigatorFullName":60,"investigatorTitle":61,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"PRINCIPAL_INVESTIGATOR","Jane Chudleigh","Principal Investigator",[63,65,67,69],{"name":64,"class":6},"University of Manchester",{"name":66,"class":6},"University of Sheffield",{"name":68,"class":6},"Coventry University",{"name":70,"class":71},"National Health Service, United Kingdom","OTHER_GOV","100489284","the-experience-of-screening-for-scid-100489284",false,"NCT05651113","The Experience of Screening for SCID","Exploring Parents' and Health Professionals' Experiences of Screening for Severe Combined Immunodeficiency","Inclusion Criteria:\n\nParticipants must be at least 18 years of age. Participants must be able to understand the purpose and implications of the research study.\n\nWhere participants are speakers of languages other than English, the research team will arrange a translator.\n\nExclusion Criteria:\n\nWhere a child dies after recruitment to the project the team will sensitively check whether the parents wish to continue participation to enable their views to be included.",true,"ALL","18 Years",{"count":83,"type":84},90,"ESTIMATED","OBSERVATIONAL","This project will evaluate the impact of including Severe Combined Immunodeficiency into the newborn bloodspot screening panel. It will recruit parents and health professionals primarily from the sites where this new form of screening is being trialled well as additional sites where clinicians will be involved in the care of these babies and comparator groups are needed.\n\nThe proposed work will consist of two work packages. The first, a mixed-methods study conducted with families from the point of screening information being returned through to the child's fifth birthday. The second, a qualitative interview study conducted with health professionals during the clinical evaluation phase of the national pilot programme.",[88],"Severe Combined Immunodeficiency","2022-12-06",{"date":91,"type":92},"2022-12-14","ACTUAL",{"date":94,"type":92},"2022-11-09",{"date":96,"type":84},"2029-03-31",{"name":5,"class":6},1]