{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T19:46:03Z","timestamp":1787600763370,"version":"build-2736575974"},"reference-count":39,"publisher":"Centers for Disease Control MMWR Office","issue":"9","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["MMWR Surveill. Summ."],"DOI":"10.15585\/mmwr.ss7109a1","type":"journal-article","created":{"date-parts":[[2022,10,6]],"date-time":"2022-10-06T15:23:42Z","timestamp":1665069822000},"page":"1-18","source":"Crossref","is-referenced-by-count":34,"title":["Surveillance for Sickle Cell Disease \u2014 Sickle Cell Data Collection Program, Two States, 2004\u20132018"],"prefix":"10.15585","volume":"71","author":[{"given":"Angela B.","family":"Snyder","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sangeetha","family":"Lakshmanan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary M.","family":"Hulihan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan T.","family":"Paulukonis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mei","family":"Zhou","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophia S.","family":"Horiuchi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karon","family":"Abe","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shammara N.","family":"Pope","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura A.","family":"Schieve","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"6224","published-online":{"date-parts":[[2022,10,7]]},"reference":[{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R1","unstructured":"CDC. CDC\u2019s Sickle Cell Data Collection (SCDC) program. Atlanta, GA: US Department of Health and Human Services, CDC; 2021. https:\/\/www.cdc.gov\/ncbddd\/hemoglobinopathies\/scdc-factsheet.html"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R2","doi-asserted-by":"publisher","first-page":"599","DOI":"10.1177\/0033354919881438","article-title":"Reducing health care disparities in sickle cell disease: a review.","volume":"134","author":"Lee","year":"2019","journal-title":"Public Health Rep"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R3","doi-asserted-by":"publisher","first-page":"e1915374","DOI":"10.1001\/jamanetworkopen.2019.15374","article-title":"Estimated life expectancy and income of patients with sickle cell disease compared with those without sickle cell disease.","volume":"2","author":"Lubeck","year":"2019","journal-title":"JAMA Netw Open"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R4","unstructured":"CDC. Data and statistics on sickle cell disease. Atlanta, GA: US Department of Health and Human Services, CDC; 2021. https:\/\/www.cdc.gov\/ncbddd\/sicklecell\/data.html"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R5","doi-asserted-by":"publisher","first-page":"e80","DOI":"10.1016\/S2214-109X(13)70150-5","article-title":"Global migration and the changing distribution of sickle haemoglobin: a quantitative study of temporal trends between 1960 and 2000.","volume":"2","author":"Piel","year":"2014","journal-title":"Lancet Glob Health"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R6","unstructured":"Bender MA. Sickle cell disease. In: Adam MP, Ardinger HH, Pagon RA, Wallace SE, et al., eds. GeneReviews. Seattle, WA: University of Washington, Seattle; 2003."},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R7","unstructured":"MedlinePlus. HBB gene. Bethesda, MD: National Library of Medicine; 2020. https:\/\/medlineplus.gov\/genetics\/gene\/hbb"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R8","unstructured":"National Heart, Lung, and Blood Institute. What is sickle cell disease? Bethesda, MD: National Institutes of Health; 2022. https:\/\/www.nhlbi.nih.gov\/health\/sickle-cell-disease"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R9","doi-asserted-by":"publisher","first-page":"20","DOI":"10.1186\/s13045-022-01237-z","article-title":"Advances in the diagnosis and treatment of sickle cell disease.","volume":"15","author":"Brandow","year":"2022","journal-title":"J Hematol Oncol"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R10","unstructured":"CDC. What is sickle cell trait? Atlanta, GA: US Department of Health and Human Services, CDC; 2020. https:\/\/www.cdc.gov\/ncbddd\/sicklecell\/traits.html"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R11","doi-asserted-by":"publisher","first-page":"435","DOI":"10.1182\/asheducation-2017.1.435","article-title":"Chronic organ failure in adult sickle cell disease.","volume":"2017","author":"Vichinsky","year":"2017","journal-title":"Hematology (Am Soc Hematol Educ Program)"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R12","doi-asserted-by":"publisher","first-page":"404","DOI":"10.1002\/ajh.26063","article-title":"Impact of sickle cell disease on patients\u2019 daily lives, symptoms reported, and disease management strategies: results from the international Sickle Cell World Assessment Survey (SWAY).","volume":"96","author":"Osunkwo","year":"2021","journal-title":"Am J Hematol"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R13","doi-asserted-by":"publisher","first-page":"3804","DOI":"10.1182\/bloodadvances.2020001743","article-title":"Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects.","volume":"4","author":"Kanter","year":"2020","journal-title":"Blood Adv"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R14","doi-asserted-by":"publisher","first-page":"91","DOI":"10.3122\/jabfm.2020.01.190143","article-title":"Sickle-cell disease co-management, health care utilization, and hydroxyurea use.","volume":"33","author":"Crego","year":"2020","journal-title":"J Am Board Fam Med"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R15","doi-asserted-by":"publisher","first-page":"e0265342","DOI":"10.1371\/journal.pone.0265342","article-title":"Perspectives of individuals with sickle cell disease on barriers to care.","volume":"17","author":"Phillips","year":"2022","journal-title":"PLoS One"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R16","unstructured":"National Heart, Lung, and Blood Institute. Evidence-based management of sickle cell disease: expert panel report, 2014. Bethesda, MD: National Institutes of Health; 2014. https:\/\/www.nhlbi.nih.gov\/health-topics\/evidence-based-management-sickle-cell-disease"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R17","unstructured":"National Heart, Lung and Blood Institute. Sickle cell disease. Bethesda, MD: National Institutes of Health; 2022. https:\/\/www.nhlbi.nih.gov\/health\/sickle-cell-disease\/treatment"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R18","doi-asserted-by":"publisher","first-page":"2656","DOI":"10.1182\/bloodadvances.2020001851","article-title":"American Society of Hematology 2020 guidelines for sickle cell disease: management of acute and chronic pain.","volume":"4","author":"Brandow","year":"2020","journal-title":"Blood Adv"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R19","doi-asserted-by":"publisher","first-page":"e050880","DOI":"10.1136\/bmjopen-2021-050880","article-title":"Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA.","volume":"11","author":"Smeltzer","year":"2021","journal-title":"BMJ Open"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R20","doi-asserted-by":"publisher","first-page":"255","DOI":"10.1586\/ehm.10.22","article-title":"Hydroxyurea use in sickle cell disease: the battle with low prescription rates, poor patient compliance and fears of toxicities.","volume":"3","author":"Brandow","year":"2010","journal-title":"Expert Rev Hematol"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R21","unstructured":"Ashorobi D, Bhatt R. Bone marrow transplantation in sickle cell disease. In: StatPearls. Treasure Island, FL: StatPearls Publishing; 2022. https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK538515\/"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R22","doi-asserted-by":"publisher","first-page":"174","DOI":"10.1182\/hematology.2021000250","article-title":"Gene therapy for sickle cell disease: where we are now?","volume":"2021","author":"Kanter","year":"2021","journal-title":"Hematology (Am Soc Hematol Educ Program)"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R23","doi-asserted-by":"publisher","first-page":"899","DOI":"10.1016\/j.jcyt.2018.04.003","article-title":"Gene therapy for sickle cell disease: an update.","volume":"20","author":"Demirci","year":"2018","journal-title":"Cytotherapy"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R24","doi-asserted-by":"publisher","first-page":"1902","DOI":"10.1056\/NEJMp2022125","article-title":"When actions speak louder than words\u2014racism and sickle cell disease.","volume":"383","author":"Power-Hays","year":"2020","journal-title":"N Engl J Med"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R25","doi-asserted-by":"publisher","first-page":"786065","DOI":"10.3389\/fneur.2021.786065","article-title":"Academic performance of children with sickle cell disease in the United States: a meta-analysis.","volume":"12","author":"Heitzer","year":"2021","journal-title":"Front Neurol"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R26","doi-asserted-by":"publisher","first-page":"419","DOI":"10.1182\/blood-2019-129874","article-title":"The relationship between mental health, educational attainment, employment outcomes, and pain in sickle cell disease.","volume":"134","author":"Harris","year":"2019","journal-title":"Blood"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R27","doi-asserted-by":"publisher","first-page":"496","DOI":"10.1182\/hematology.2019000054","article-title":"A program of transition to adult care for sickle cell disease.","volume":"2019","author":"Saulsberry","year":"2019","journal-title":"Hematology (Am Soc Hematol Educ Program)"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R28","doi-asserted-by":"publisher","first-page":"213","DOI":"10.1097\/NCM.0000000000000260","article-title":"Barriers to care for persons with sickle cell disease: the case manager\u2019s opportunity to improve patient outcomes.","volume":"23","author":"Brennan-Cook","year":"2018","journal-title":"Prof Case Manag"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R29","doi-asserted-by":"publisher","first-page":"e26390","DOI":"10.1002\/pbc.26390","article-title":"Emergency department utilization by Californians with sickle cell disease, 2005\u20132014.","volume":"64","author":"Paulukonis","year":"2017","journal-title":"Pediatr Blood Cancer"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R30","doi-asserted-by":"publisher","first-page":"S1","DOI":"10.1016\/j.annemergmed.2020.07.029","article-title":"The state of sickle cell disease care in the United States: how can emergency medicine contribute?","volume":"76","author":"Giroir","year":"2020","journal-title":"Ann Emerg Med"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R31","doi-asserted-by":"publisher","first-page":"125","DOI":"10.1038\/gim.2014.81","article-title":"State-based surveillance for selected hemoglobinopathies.","volume":"17","author":"Hulihan","year":"2015","journal-title":"Genet Med"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R32","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1002\/ajh.21570","article-title":"The number of people with sickle-cell disease in the United States: national and state estimates.","volume":"85","author":"Brousseau","year":"2010","journal-title":"Am J Hematol"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R33","doi-asserted-by":"publisher","first-page":"e213467","DOI":"10.1001\/jamahealthforum.2021.3467","article-title":"Improving outcomes for patients with sickle cell disease in the United States: making the case for more resources, surveillance, and longitudinal data.","volume":"2","author":"Kanter","year":"2021","journal-title":"JAMA Health Forum"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R34","doi-asserted-by":"publisher","first-page":"S512","DOI":"10.1016\/j.amepre.2009.12.022","article-title":"Population estimates of sickle cell disease in the U.S.","volume":"38","author":"Hassell","year":"2010","journal-title":"Am J Prev Med"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R35","doi-asserted-by":"publisher","first-page":"274","DOI":"10.1177\/0033354919839072","article-title":"Improving an administrative case definition for longitudinal surveillance of sickle cell disease.","volume":"134","author":"Snyder","year":"2019","journal-title":"Public Health Rep"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R36","unstructured":"Georgia Health Policy Center. Sickle Cell Data Collection program brief: access to care for children. Atlanta, GA: Georgia State University, Georgia Health Policy Center, Andrew Young School of Policy Studies, Hemoglobin Disorders Data Coordinating Center; 2019. https:\/\/ghpc.gsu.edu\/download\/sickle-cell-data-collection-program-brief-access-to-care-for-children\/"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R37","doi-asserted-by":"publisher","first-page":"200","DOI":"10.1007\/s10995-012-1216-3","article-title":"Sickle cell disease in pregnancy: maternal complications in a Medicaid-enrolled population.","volume":"17","author":"Boulet","year":"2013","journal-title":"Matern Child Health J"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R38","unstructured":"AB-1105 Sickle Cell Disease. California Legislature 2019\u201320 Regular Session. https:\/\/leginfo.legislature.ca.gov\/faces\/billTextClient.xhtml?bill_id=201920200AB1105"},{"key":"key-10.15585\/mmwr.ss7109a1-202210061048-R39","unstructured":"Georgia State Senate. The final report of the Senate Study Committee on Sickle Cell Anemia. Atlanta, GA: Georgia State Senate, Senate Research Office; 2021. https:\/\/www.senate.ga.gov\/committees\/Documents\/sicklecell_finalreport21.pdf"}],"container-title":["MMWR. Surveillance Summaries"],"original-title":[],"deposited":{"date-parts":[[2023,11,28]],"date-time":"2023-11-28T14:55:12Z","timestamp":1701183312000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.cdc.gov\/mmwr\/volumes\/71\/ss\/ss7109a1.htm?s_cid=ss7109a1_w"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,10,7]]},"references-count":39,"journal-issue":{"issue":"9","published-online":{"date-parts":[[2022,10,7]]}},"URL":"https:\/\/doi.org\/10.15585\/mmwr.ss7109a1","relation":{},"ISSN":["1546-0738","1545-8636"],"issn-type":[{"value":"1546-0738","type":"print"},{"value":"1545-8636","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2022,10,7]]},"published":{"date-parts":[[2022,10,7]]}}}