[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100545744":3},{"organization":4,"armGroups":7,"interventions":14,"overallOfficials":20,"centralContacts":25,"locations":35,"responsibleParty":173,"collaborators":10,"id":175,"slug":176,"hasResults":177,"nctId":178,"briefTitle":179,"officialTitle":179,"acronym":180,"eligibilityCriteria":181,"healthyVolunteers":177,"sex":182,"minAge":183,"maxAge":10,"enrollmentInfo":184,"targetDuration":10,"studyType":187,"phases":10,"briefSummary":188,"conditions":189,"keywords":191,"overallStatus":37,"whyStopped":10,"lastUpdateSubmitDate":194,"lastUpdatePostDateStruct":195,"startDateStruct":198,"completionDateStruct":200,"leadSponsor":202,"locationsCount":203},{"fullName":5,"class":6},"RTI International","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":12},"Individuals diagnosed with Sickle Cell Disease (SCD) but not receiving care from an SCD specialist.",null,"Individuals diagnosed with Sickle Cell Disease (SCD) but unaffiliated from SCD specialist care. These individuals will be connected to a linkage coordinator (trained staff) to provide a patient-centered approach to engagement with SCD specialist care.",[13],"Behavioral: Linkage Coordinator",[15],{"type":16,"name":17,"description":18,"armGroupLabels":19,"otherNames":10},"BEHAVIORAL","Linkage Coordinator","The Linkage Coordinator (LC) will be the initial contact with unaffiliated SCD patients to establish a relationship, champion preventative services, and support them in engaging with an SCD specialist by helping patients address barriers to care. Study staff will provide initial and ongoing training to the LC to ensure they have adequate support to effectively engage with patients.",[9],[21],{"name":22,"affiliation":23,"role":24},"Julie Kanter, MD","University of Alabama, Birmingham (UAB)","PRINCIPAL_INVESTIGATOR",[26,31],{"name":27,"role":28,"phone":29,"phoneExt":10,"email":30},"Lisa A Cox, MS","CONTACT","770-407-4908","lacox@rti.org",{"name":32,"role":28,"phone":33,"phoneExt":10,"email":34},"Sara Jacobs, PhD","770-407-4951","sjacobs@rti.org",[36,53,68,83,98,113,128,143,158],{"facility":23,"status":37,"city":38,"state":39,"zip":40,"country":41,"countryCode":42,"cosmosGeoPoint":43,"geoPoint":48,"contacts":49},"RECRUITING","Birmingham","Alabama","35233","United States","US",{"type":44,"coordinates":45},"Point",[46,47],-86.80249,33.52066,{"lat":47,"lon":46},[50],{"name":22,"role":28,"phone":51,"phoneExt":10,"email":52},"(205) 934-0435","jkanter@uabmc.edu",{"facility":54,"status":37,"city":55,"state":56,"zip":57,"country":41,"countryCode":42,"cosmosGeoPoint":58,"geoPoint":62,"contacts":63},"Phoenix Children's Hospital","Phoenix","Arizona","85016",{"type":44,"coordinates":59},[60,61],-112.07404,33.44838,{"lat":61,"lon":60},[64],{"name":65,"role":28,"phone":66,"phoneExt":10,"email":67},"Sanjay Shah","602-933-0920","sshah2@phoenixchildrens.com",{"facility":69,"status":37,"city":70,"state":71,"zip":72,"country":41,"countryCode":42,"cosmosGeoPoint":73,"geoPoint":77,"contacts":78},"University of California, San Francisco (UCSF)","Oakland","California","94609",{"type":44,"coordinates":74},[75,76],-122.2708,37.80437,{"lat":76,"lon":75},[79],{"name":80,"role":28,"phone":81,"phoneExt":10,"email":82},"Marsha Treadwell, PhD","(510) 428-3356","marsha.treadwell@ucsf.edu",{"facility":84,"status":37,"city":85,"state":86,"zip":87,"country":41,"countryCode":42,"cosmosGeoPoint":88,"geoPoint":92,"contacts":93},"Augusta University","Augusta","Georgia","30901",{"type":44,"coordinates":89},[90,91],-81.97484,33.47097,{"lat":91,"lon":90},[94],{"name":95,"role":28,"phone":96,"phoneExt":10,"email":97},"Robert Gibson, PhD","(706) 721-1005","rogibson@augusta.edu",{"facility":99,"status":37,"city":100,"state":101,"zip":102,"country":41,"countryCode":42,"cosmosGeoPoint":103,"geoPoint":107,"contacts":108},"University of Illinois","Chicago","Illinois","60612",{"type":44,"coordinates":104},[105,106],-87.65005,41.85003,{"lat":106,"lon":105},[109],{"name":110,"role":28,"phone":111,"phoneExt":10,"email":112},"Lewis Hsu, MD, PhD","312-355-5019","lewhsu@uic.edu",{"facility":114,"status":37,"city":115,"state":116,"zip":117,"country":41,"countryCode":42,"cosmosGeoPoint":118,"geoPoint":122,"contacts":123},"Cleveland Clinic","Cleveland","Ohio","44195",{"type":44,"coordinates":119},[120,121],-81.69541,41.4995,{"lat":121,"lon":120},[124],{"name":125,"role":28,"phone":126,"phoneExt":10,"email":127},"Ravi Talati","216.444.5437","walterk15@ccf.org",{"facility":129,"status":37,"city":130,"state":131,"zip":132,"country":41,"countryCode":42,"cosmosGeoPoint":133,"geoPoint":137,"contacts":138},"University of Pennsylvania","Philadelphia","Pennsylvania","19104",{"type":44,"coordinates":134},[135,136],-75.16362,39.95238,{"lat":136,"lon":135},[139],{"name":140,"role":28,"phone":141,"phoneExt":10,"email":142},"Nadia Ali","215-615-6555","nadia.ali.07@gmail.com",{"facility":144,"status":37,"city":145,"state":146,"zip":147,"country":41,"countryCode":42,"cosmosGeoPoint":148,"geoPoint":152,"contacts":153},"University of Tennessee at Memphis","Memphis","Tennessee","38163",{"type":44,"coordinates":149},[150,151],-90.04898,35.14953,{"lat":151,"lon":150},[154],{"name":155,"role":28,"phone":156,"phoneExt":10,"email":157},"Ugochi Ogu","901.545.8535","uogu@uthsc.edu",{"facility":159,"status":37,"city":160,"state":161,"zip":162,"country":41,"countryCode":42,"cosmosGeoPoint":163,"geoPoint":167,"contacts":168},"University of Texas at Houston","Houston","Texas","77030",{"type":44,"coordinates":164},[165,166],-95.36327,29.76328,{"lat":166,"lon":165},[169],{"name":170,"role":28,"phone":171,"phoneExt":10,"email":172},"Modupe Idowu","(713) 486-5660","Modupe.Idowu@uth.tmc.edu",{"type":174,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100545744","recruitment-and-engagement-in-care-to-impact-practice-enhancement-recipe-for-sickle-cell-disease-100545744",false,"NCT06385886","Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease","RECIPE","Inclusion Criteria:\n\n* Persons must be \\>\u002F= 18 years of age\n* Persons must have confirmed SCD\n* Persons not seen by a SCD specialist \\> 1 year +\u002F- 3 months\n* Literacy in English will be required of the consenting patient or parent\u002Fguardian\n\nExclusion Criteria:\n\n* Persons \\\u003C 18 years of age\n* Persons that are unable to provide informed consent and do not have a designated care-giver that can consent on his\u002Fher behalf\n* Persons with sickle cell trait (as per hemoglobin electrophoresis)\n* Persons seen by a SCD specialist \\\u003C 1 year +\u002F1 3 months","ALL","18 Years",{"count":185,"type":186},500,"ESTIMATED","OBSERVATIONAL","The goal of this observational study is to help us understand more about the best ways to help individuals living with Sickle Cell Disease (SCD) get the best care. The main question it aims to answer is: How to find individuals unaffiliated from SCD specialist care use three distinct pathways? Once unaffiliated individuals are found using the pathways, Investigators will employ linkage coordinators (trained staff) to engage these patients in care. Participants will be asked to fill out an assessment survey which will cover areas such as previous and current treatment, clinic and hospital experience, pain, and quality of life. Participants will also be given the option of participation in a 1-hour long interview how they feel about treatment for sickle cell disease including clinic experience, pain, and quality of life?",[190],"Sickle Cell Disease",[192,193,17],"Sickle Cell Disease Care","Unaffiliated patients","2025-06-19",{"date":196,"type":197},"2025-06-22","ACTUAL",{"date":199,"type":197},"2023-06-08",{"date":201,"type":186},"2027-12",{"name":5,"class":6},9]