protocolSection identificationModule nctId: NCT06385886, orgStudyIdInfo id: 1R01HL158807-01A1, type: NIH, link: https://reporter.nih.gov/quickSearch/1R01HL158807-01A1, briefTitle: Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease, acronym: RECIPE, statusModule overallStatus: RECRUITING, startDateStruct date: 2023-06-08, primaryCompletionDateStruct date: 2027-10, completionDateStruct date: 2027-12, studyFirstPostDateStruct date: 2024-04-26, lastUpdatePostDateStruct date: 2024-04-26, sponsorCollaboratorsModule leadSponsor name: RTI International, class: OTHER, descriptionModule briefSummary: 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?, conditionsModule conditions: Sickle Cell Disease, designModule studyType: OBSERVATIONAL, designInfo observationalModel: CASE_ONLY, timePerspective: PROSPECTIVE, enrollmentInfo count: 150, type: ESTIMATED, armsInterventionsModule interventions name: Linkage Coordinator, outcomesModule primaryOutcomes measure: Identification of unaffiliated patients, primaryOutcomes measure: Affiliation with a Sickle cell disease (SCD)-specific care with SCD specialist, secondaryOutcomes measure: Scale Out to Other SCD Centers - Implementation in at least 2 other SCD Center study sites, eligibilityModule sex: ALL, minimumAge: 18 Years, stdAges: ADULT, stdAges: OLDER_ADULT, contactsLocationsModule locations facility: University of Alabama, Birmingham (UAB), status: RECRUITING, city: Birmingham, state: Alabama, zip: 35233, country: United States, contacts name: Julie Kanter, MD, role: CONTACT, phone: 205-934-0435, email: jkanter@uabmc.edu, geoPoint lat: 33.52066, lon: -86.80249, locations facility: University of California, San Francisco (UCSF), status: RECRUITING, city: Oakland, state: California, zip: 94609, country: United States, contacts name: Marsha Treadwell, PhD, role: CONTACT, phone: 510-428-3356, email: marsha.treadwell@ucsf.edu, geoPoint lat: 37.80437, lon: -122.2708, locations facility: Augusta University, status: RECRUITING, city: Augusta, state: Georgia, zip: 30901, country: United States, contacts name: Robert Gibson, PhD, role: CONTACT, phone: 706-721-1005, email: rogibson@augusta.edu, geoPoint lat: 33.47097, lon: -81.97484, locations facility: University of Illinois, status: RECRUITING, city: Chicago, state: Illinois, zip: 60612, country: United States, contacts name: Lewis Hsu, MD, PhD, role: CONTACT, phone: 312-355-5019, email: lewhsu@uic.edu, geoPoint lat: 41.85003, lon: -87.65005, hasResults: False