[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"neonatal-screening\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:neonatal-screening":25},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,39],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":13,"acronym":14,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":18,"enrollmentInfo":19,"targetDuration":17,"studyType":22,"phases":4,"briefSummary":23,"conditions":24,"keywords":4,"overallStatus":27,"whyStopped":4,"lastUpdateSubmitDate":28,"lastUpdatePostDateStruct":29,"startDateStruct":32,"completionDateStruct":34,"leadSponsor":36,"locationsCount":5},"100392721","a-pilot-study-for-systematic-neonatal-screening-for-lysosomal-storage-diseases-using-tandem-mass-spectrometry-100392721",false,"NCT04393701","A Pilot Study for Systematic Neonatal Screening for Lysosomal Storage Diseases Using Tandem Mass Spectrometry","LysoNeo","Inclusion Criteria:\n\n* Newborn in a Normandy maternity hospital\n* Newborn participating in the National Neonatal Screening Program\n* Holder(s) of parental authority having read and understood the information letter and signed the informed consent form\n\nExclusion Criteria:\n\nThere are no criteria for non-inclusion in this study. Participation in the study, such as participation in the National Neonatal Screening Program, is not mandatory.","ALL","1 Day","4 Days",{"count":20,"type":21},100000,"ESTIMATED","OBSERVATIONAL","The study will include all newborns in Normandie region for 3 years (about 105,000 births) for whom signed consent by one (or two) parents will be collected. Based on our previous pilot study (2011) assessing MCAD and PKU using tandem mass spectrometry-based method in Normandie region in which informed consents have been signed for all newborns (43,000) but we are expecting a great willingness to participate to this project. Thus, we are aiming to include 100,000 newborns, and the study will be continued until we reach at least this target.\n\nThe primary objective is to evaluate the epidemiology of MPS1 and Pompe disease using dried blood samples in the first cohort of neonates tested in France (Normandie region).",[25,26],"Neonatal Screening","Lysosomal Storage Diseases","RECRUITING","2026-05-21",{"date":30,"type":31},"2026-05-27","ACTUAL",{"date":33,"type":31},"2021-03-08",{"date":35,"type":21},"2026-12-08",{"name":37,"class":38},"University Hospital, Rouen","OTHER",{"id":40,"slug":41,"hasResults":11,"nctId":42,"briefTitle":43,"officialTitle":44,"acronym":45,"eligibilityCriteria":46,"healthyVolunteers":47,"sex":16,"minAge":48,"maxAge":4,"enrollmentInfo":49,"targetDuration":4,"studyType":51,"phases":52,"briefSummary":54,"conditions":55,"keywords":58,"overallStatus":27,"whyStopped":4,"lastUpdateSubmitDate":62,"lastUpdatePostDateStruct":63,"startDateStruct":65,"completionDateStruct":67,"leadSponsor":69,"locationsCount":5},"100530878","implementing-a-novel-consent-process-for-biospecimen-research-after-newborn-screening-100530878","NCT06192511","Implementing a Novel Consent Process for Biospecimen Research After Newborn Screening","Implementing a Novel Consent Process for Biospecimen Research After Newborn Screening in Hospitals Serving Diverse Patients","MICI","Inclusion Criteria:\n\n* Adult (\\> 18 years)\n* English, Spanish or Arabic speaking\n* Just gave birth and currently a patient in the Mother \\& Baby Unit in the hospital\n\nExclusion Criteria:\n\n* Parents of infants who are born pre-term (\\\u003C 37 weeks gestation)\n* Parents of infants in the Neonatal Intensive Care Unit\n* Parents of infants being put up for adoption or in situations where legal guardianship is unknown at the time of birth",true,"18 Years",{"count":50,"type":21},5980,"INTERVENTIONAL",[53],"NA","The purpose of this study is to implement an electronic consent education process for the retention and research use of residual dried bloodspots at four hospitals in Michigan and assess the impact of the new education, both on patients and hospital staff. The research team will recruit women who have just given birth to answer surveys about the Michigan BioTrust consent process. Surveys will be collected from participants in the hospital and again four weeks later. The research team will collect survey data from patient participants at each hospital prior to hospital staff implementation of the new education process and again after staff implementation.",[56,57,25],"Implementation Science","Informed Consent",[59,60,61],"newborn screening","informed consent","biobanking","2025-06-16",{"date":64,"type":31},"2025-06-19",{"date":66,"type":31},"2024-05-15",{"date":68,"type":21},"2028-04-30",{"name":70,"class":38},"Erin Rothwell"]