References
1. Kanter J, Meier ER, Hankins JS, Paulukonis ST, Snyder AB. Improving outcomes for patients with sickle cell disease in the United States: Making the case for more resources, surveillance, and longitudinal data.JAMA Health Forum . 2021;2(10):e213467. doi:doi:10.1001/jamahealthforum.2021.3467
2. Skinner MW, Soucie JM, McLaughlin K. The national haemophilia program standards, evaluation and oversight systems in the United States of America. Blood Transfus . Apr 2014;12 Suppl 3:e542-8. doi:10.2450/2014.0019-14s
3. Yawn BP, Buchanan GR, Afenyi-Annan AN, et al. Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. JAMA . Sep 10 2014;312(10):1033-48. doi:10.1001/jama.2014.10517
4. Reeves SL, Tribble AC, Madden B, Freed GL, Dombkowski KJ. Antibiotic Prophylaxis for Children With Sickle Cell Anemia. Pediatrics . Mar 2018;141(3)doi:10.1542/peds.2017-2182
5. Kanter J, Phillips S, Schlenz AM, et al. Transcranial Doppler Screening in a Current Cohort of Children With Sickle Cell Anemia: Results From the DISPLACE Study. J Pediatr Hematol Oncol . Nov 1 2021;43(8):e1062-e1068. doi:10.1097/MPH.0000000000002103
6. Heitzer AM, Longoria J, Okhomina V, et al. Hydroxyurea treatment and neurocognitive functioning in sickle cell disease from school age to young adulthood. Br J Haematol . Oct 2021;195(2):256-266. doi:10.1111/bjh.17687
7. Adams RJ, McKie VC, Hsu L, et al. Prevention of a first stroke by transfusions in children with sickle cell anemia and abnormal results on transcranial Doppler ultrasonography. New England Journal of Medicine . 1998;339(1):5-11.
8. Lanzkron S, Carroll CP, Haywood C, Jr. Mortality rates and age at death from sickle cell disease: U.S., 1979-2005. Public Health Rep . Mar-Apr 2013;128(2):110-6. doi:10.1177/003335491312800206
9. Manley AF. Legislation and funding for sickle cell services, 1972-1982. Am J Pediatr Hematol Oncol . Spring 1984;6(1):67-71.
10. Kanter J, Smith WR, Desai PC, et al. Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Adv . Aug 25 2020;4(16):3804-3813. doi:10.1182/bloodadvances.2020001743
11. Dalkey N, Helmer O. An experimental application of the Delphi method to the use of experts. Management Science . April 1963 1963;9(3):458-467.
12. Power-Hays A, Li S, Mensah A, Sobota A. Universal screening for social determinants of health in pediatric sickle cell disease: A quality-improvement initiative. Pediatr Blood Cancer . Jan 2020;67(1):e28006. doi:10.1002/pbc.28006
13. DeBaun MR, Jordan LC, King AA, et al. American Society of Hematology 2020 guidelines for sickle cell disease: prevention, diagnosis, and treatment of cerebrovascular disease in children and adults. Blood Adv . Apr 28 2020;4(8):1554-1588. doi:10.1182/bloodadvances.2019001142
14. Meier ER, Janson IA, Hampton K, et al. Adherence to Quality of Care Indicators and Location of Sickle Cell Care Within Indiana. J Community Health . Feb 2020;45(1):81-87. doi:10.1007/s10900-019-00721-x
15. Brandow AM, Carroll CP, Creary S, et al. American Society of Hematology 2020 guidelines for sickle cell disease: management of acute and chronic pain. Blood Adv . Jun 23 2020;4(12):2656-2701. doi:10.1182/bloodadvances.2020001851
16. Bryant R, Porter JS, Sobota A, Association of Pediatric Hematology/Oncology N, American Society of Pediatri Hematology O. APHON/ASPHO Policy Statement for the Transition of Patients With Sickle Cell Disease From Pediatric to Adult Health Care. J Pediatr Oncol Nurs . Nov-Dec 2015;32(6):355-9. doi:10.1177/1043454215591954
17. Brousseau DC, Owens PL, Mosso AL, Panepinto JA, Steiner CA. Acute care utilization and rehospitalizations for sickle cell disease.JAMA . Apr 7 2010;303(13):1288-94. doi:10.1001/jama.2010.378
18. Kayle M, Docherty SL, Sloane R, et al. Transition to adult care in sickle cell disease: A longitudinal study of clinical characteristics and disease severity. Pediatr Blood Cancer . Jan 2019;66(1):e27463. doi:10.1002/pbc.27463
19. Chou ST, Alsawas M, Fasano RM, et al. American Society of Hematology 2020 guidelines for sickle cell disease: transfusion support.Blood Adv . Jan 28 2020;4(2):327-355. doi:10.1182/bloodadvances.2019001143
20. Kanter J, Liem RI, Bernaudin F, et al. American Society of Hematology 2021 guidelines for sickle cell disease: stem cell transplantation. Blood Adv . Sep 28 2021;5(18):3668-3689. doi:10.1182/bloodadvances.2021004394C
21. Karsenty C, Tubman VN, Liu CJ, Fasipe T, Wyatt KEK. Regional anesthesia for sickle cell disease vaso-occlusive crisis: a single-center case series. Pediatr Blood Cancer . 2022;
22. Farooq F, Mogayzel PJ, Lanzkron S, Haywood C, Strouse JJ. Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity.JAMA Netw Open . Mar 2 2020;3(3):e201737. doi:10.1001/jamanetworkopen.2020.1737
23. Karkoska K, Appiah-Kubi A, Rocker J, Stoffels G, Aygun B. Management of vaso-occlusive episodes in the day hospital decreases admissions in children with sickle cell disease. Br J Haematol . Sep 2019;186(6):855-860. doi:10.1111/bjh.16002
24. Majumdar SR, Roe MT, Peterson ED, Chen AY, Gibler WB, Armstrong PW. Better outcomes for patients treated at hospitals that participate in clinical trials. Arch Intern Med . Mar 24 2008;168(6):657-62. doi:10.1001/archinternmed.2007.124
25. Soucie JM, Nuss R, Evatt B, et al. Mortality among males with hemophilia: relations with source of medical care. The Hemophilia Surveillance System Project Investigators. Blood . Jul 15 2000;96(2):437-42.
26. Marshall BC, Nelson EC. Accelerating implementation of biomedical research advances: critical elements of a successful 10 year Cystic Fibrosis Foundation healthcare delivery improvement initiative.BMJ Qual Saf . Apr 2014;23 Suppl 1:i95-i103. doi:10.1136/bmjqs-2013-002790
27. Mogayzel PJ, Jr., Dunitz J, Marrow LC, Hazle LA. Improving chronic care delivery and outcomes: the impact of the cystic fibrosis Care Center Network. BMJ Qual Saf . Apr 2014;23 Suppl 1:i3-8. doi:10.1136/bmjqs-2013-002363
28. Freed GL. A Missed Opportunity to Address a National Shame: The Case of Sickle Cell Disease in the United States. JAMA Pediatr . Aug 1 2019;173(8):715-716. doi:10.1001/jamapediatrics.2019.1536
29. Power-Hays A, Dandoy CE, Lorts A, et al. US News & World Report and quality metrics: Inclusion of sickle cell disease is a matter of equity.Pediatr Blood Cancer . Apr 20 2022:e29679. doi:10.1002/pbc.29679
30. Power-Hays A, McGann PT. When Actions Speak Louder Than Words - Racism and Sickle Cell Disease. N Engl J Med . Nov 12 2020;383(20):1902-1903. doi:10.1056/NEJMp2022125
31. Brown LC, Hampton KC, Bloom EM, Lawson D, Cooper SH, Meier ER. No child left behind: Building a comprehensive sickle cell disease care oasis in the Lake County, Indiana care desert. Pediatr Blood Cancer . Aug 2022;69(8):e29619. doi:10.1002/pbc.29619
TABLE 1 Essential elements of pediatric SCD centers