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Wang WC, Ware RE, Miller ST, et al; BABY HUG investigators. Hydroxycarbamide in very young children with sickle-cell anaemia: a multicentre, randomised, controlled trial (BABY HUG). Lancet. 2011 May 14;377(9778):1663-72.

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Steinberg MH, McCarthy WF, Castro O, et al. The risks and benefits of long-term use of hydroxyurea in sickle cell anemia: a 17.5 year follow-up. Am J Hematol. 2010 Jun;85(6):403-8.

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Howard J, Malfroy M, Llewelyn C, et al. The Transfusion Alternatives Preoperatively in Sickle Cell Disease (TAPS) study: a randomised, controlled, multicentre clinical trial. Lancet. 2013 Mar 16;381(9870):930-8.

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Mantadakis E, Cavender JD, Rogers ZR, et al. Prevalence of priapism in children and adolescents with sickle cell anemia. J Pediatr Hematol Oncol. 1999 Nov-Dec;21(6):518-22.

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2.  National Health Service (UK). NHS sickle cell and thalassaemia (SCT) screening programme. 2018 [internet publication].

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5.  Hassell KL. Population estimates of sickle cell disease in the U.S. Am J Prev Med. 2010 Apr;38(suppl 4):S512-21.

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10.  Hebbel RP, Osarogiagbon R, Kaul D. The endothelial biology of sickle cell disease: inflammation and a chronic vasculopathy. Microcirculation. 2004 Mar;11(2):129-51.

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11.  Yale SH, Nagib N, Guthrie T. Approach to the vaso-occlusive crisis in adults with sickle cell disease. Am Fam Physician. 2000 Mar 1;61(5):1349-56, 1363-4.

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12.  Kato GJ, Onyekwere OC, Gladwin MT. Pulmonary hypertension in sickle cell disease: relevance to children. Pediatr Hematol Oncol. 2007 Apr-May;24(3):159-70.

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13.  Dormandy E, Gulliford M, Bryan S, et al. Effectiveness of earlier antenatal screening for sickle cell disease and thalassaemia in primary care: cluster randomised trial. 2010 Oct 5;341:c5132. 

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14.  US Preventive Services Task Force. Sickle cell disease (hemoglobinopathies) in newborns: screening - referred topic. September 2007 [internet publication].

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15.  Gill FM, Sleeper LA, Weiner SJ, et al; Cooperative Study of Sickle Cell Disease. Clinical events in the first decade in a cohort of infants with sickle cell disease. Blood. 1995 Jul 15;86(2):776-83.

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16.  Miller ST, Sleeper LA, Pegelow CH, et al. Prediction of adverse outcomes in children with sickle cell disease. N Engl J Med. 2000 Jan 13;342(2):83-9.

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17.  Steinberg MH. Management of sickle cell disease. N Engl J Med. 1999 Apr 1;340(13):1021-30.

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18.  Vosmaer A, Pereira RR, Koenderman JS, et al. Coagulation abnormalities in Legg-Calvé-Perthes disease. J Bone Joint Surg Am. 2010 Jan;92(1):121-8.

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19.  NHS Sickle Cell and Thalassaemia Screening Programme. Sickle cell disease in childhood: standards and guidelines for clinical care (2nd ed). October 2010 [internet publication].

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20.  Eckman J. Neonatal screening. In: Embry SH, Hebbel RP, Mohandas N, et al, eds. Sickle cell disease: basic principles and clinical practice. New York, NY: Raven Press Ltd.; 1994.

21.  Cherry MG, Greenhalgh J, Osipenko L, et al. The clinical effectiveness and cost-effectiveness of primary stroke prevention in children with sickle cell disease: a systematic review and economic evaluation. Health Technol Assess. 2012;16(43):1-129.

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22.  Alexandrov AV, Sloan MA, Tegeler CH, et al; American Society of Neuroimaging Practice Guidelines Committee. Practice standards for transcranial Doppler (TCD) ultrasound. Part II. Clinical indications and expected outcomes. J Neuroimaging. 2012 Jul;22(3):215-24.

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23.  Asnani MR, Quimby KR, Bennett NR, et al. Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications. Cochrane Database Syst Rev. 2016 Oct 6;(10):CD011175.

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24.  National Heart, Lung, and Blood Institute. Evidence-based management of sickle cell disease: expert panel report, 2014. September 2014 [internet publication].

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25.  Rankine-Mullings AE, Owusu-Ofori S. Prophylactic antibiotics for preventing pneumococcal infection in children with sickle cell disease. Cochrane Database Syst Rev. 2017 Oct 10;(10):CD003427.

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26.  Brawley OW, Cornelius LJ, Edwards LR, et al. NIH consensus development statement on hydroxyurea treatment for sickle cell disease. NIH Consens State Sci Statements. 2008 Feb 27-29;25(1):1-30.

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27.  Dekker LH, Fijnvandraat K, Brabin BJ, et al. Micronutrients and sickle cell disease, effects on growth, infection and vaso-occlusive crisis: a systematic review. Pediatr Blood Cancer. 2012 Aug;59(2):211-5.

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28.  Platt OS, Brambilla DJ, Rosse WF, et al. Mortality in sickle cell disease - life expectancy and risk factors for early death. N Engl J Med. 1994 Jun 9;330(23):1639-44.

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29.  Redwood AM, Williams EM, Desai P, et al. Climate and painful crisis of sickle-cell disease in Jamaica. BMJ. 1976 Jan 10;1(6001):66-8.

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30.  Mohan J, Marshall JM, Reid HL, et al. Peripheral vascular response to mild indirect cooling in patients with homozygous sickle cell (SS) disease and the frequency of painful crisis. Clin Sci (Lond). 1998 Feb;94(2):111-20.

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31.  Beutler E. Disorders of hemoglobin structure: sickle cell anemia and related abnormalities. In: Lichtman MA, Beutler E, Kaushansky K, et al, eds. Williams hematology. 7th ed. New York, NY: McGraw-Hill; 2006:667-700.

32.  Charache S, Terrin ML, Moore RD, et al. Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. N Engl J Med. 1995 May 18;332(20):1317-22.

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33.  Lanzkron S, Strouse JJ, Wilson R, et al. Systematic review: hydroxyurea for the treatment of adults with sickle cell disease. Ann Intern Med. 2008 Jun 17;148(12):939-55.

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34.  Segal JB, Strouse JJ, Beach MC, et al. Hydroxyurea for the treatment of sickle cell disease. Evid Rep Technol Assess (Full Rep). 2008 Mar;(165):1-95.

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35.  Hankins JS, Ware RE, Rogers ZR, et al. Long-term hydroxyurea therapy for infants with sickle cell anemia: the HUSOFT extension study. Blood. 2005 Oct 1;106(7):2269-75.

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36.  Scott JP, Hillery CA, Brown ER, et al. Hydroxyurea therapy in children severely affected with sickle cell disease. J Pediatr. 1996 Jun;128(6):820-8.

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37.  Wang WC, Helms RW, Lynn HS, et al. Effect of hydroxyurea on growth in children with sickle cell anemia: results of the HUG-KIDS Study. J Pediatr. 2002 Feb;140(2):225-9.

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38.  Wang WC, Ware RE, Miller ST, et al; BABY HUG investigators. Hydroxycarbamide in very young children with sickle-cell anaemia: a multicentre, randomised, controlled trial (BABY HUG). Lancet. 2011 May 14;377(9778):1663-72.

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39.  Zimmerman SA, Schultz WH, Davis JS, et al. Sustained long-term hematologic efficacy of hydroxyurea at maximum tolerated dose in children with sickle cell disease. Blood. 2004 Mar 15;103(6):2039-45.

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40.  Nevitt SJ, Jones AP, Howard J. Hydroxyurea (hydroxycarbamide) for sickle cell disease. Cochrane Database Syst Rev. 2017 Apr 20;(4):CD002202.

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41.  Ware RE, Helms RW; SWiTCH Investigators. Stroke with transfusions changing to hydroxyurea (SWiTCH). Blood. 2012 Apr 26;119(17):3925-32.

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42.  Kinney TR, Helms RW, O'Branski EE, et al. Safety of hydroxyurea in children with sickle cell anemia: results of the HUG-KIDS study, a phase I/II trial. Pediatric Hydroxyurea Group. Blood. 1999 Sep 1;94(5):1550-4.

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43.  Steinberg MH, Barton F, Castro O, et al. Effect of hydroxyurea on mortality and morbidity in adult sickle cell anemia: risks and benefits up to 9 years of treatment. JAMA. 2003 Apr 2;289(13):1645-51.

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44.  Voskaridou E, Christoulas D, Bilalis A, et al. The effect of prolonged administration of hydroxyurea on morbidity and mortality in adult patients with sickle cell syndromes: results of a 17-year, single-center trial (LaSHS). Blood. 2010 Mar 25;115(12):2354-63.

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45.  Steinberg MH, McCarthy WF, Castro O, et al. The risks and benefits of long-term use of hydroxyurea in sickle cell anemia: a 17.5 year follow-up. Am J Hematol. 2010 Jun;85(6):403-8.

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46.  Niihara Y, Miller ST, Kanter J, et al. A phase 3 trial of L-glutamine in sickle cell disease. N Engl J Med. 2018 Jul 19;379(3):226-35.

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47.  Quinn CT. L-glutamine for sickle cell anemia: more questions than answers. Blood. 2018 Aug 16;132(7):689-93.

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48.  Vichinsky EP, Haberkern CM, Neumayr L, et al; The Preoperative Transfusion in Sickle Cell Disease Study Group. A comparison of conservative and aggressive transfusion regimens in the perioperative management of sickle cell disease. N Engl J Med. 1995 Jul 27;333(4):206-13.

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49.  Estcourt LJ, Fortin PM, Trivella M, et al. Preoperative blood transfusions for sickle cell disease. Cochrane Database Syst Rev. 2016 Apr 6;(4):CD003149.

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50.  Howard J, Malfroy M, Llewelyn C, et al. The Transfusion Alternatives Preoperatively in Sickle Cell Disease (TAPS) study: a randomised, controlled, multicentre clinical trial. Lancet. 2013 Mar 16;381(9870):930-8.

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51.  Lee MT, Piomelli S, Granger S, et al. Stroke Prevention Trial in Sickle Cell Anemia (STOP): extended follow-up and final results. Blood. 2006 Aug 1;108(3):847-52.

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52.  Adams RJ, Brambilla D. Discontinuing prophylactic transfusions used to prevent stroke in sickle cell disease. N Engl J Med. 2005 Dec 29;353(26):2769-78.

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53.  Koshy M, Burd L, Wallace D, et al. Prophylactic red-cell transfusions in pregnant patients with sickle cell disease. A randomized cooperative study. N Engl J Med. 1988 Dec 1;319(22):1447-52.

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54.  Jacobson SJ, Kopecky EA, Joshi P, et al. Randomised trial of oral morphine for painful episodes of sickle-cell disease in children. Lancet. 1997 Nov 8;350(9088):1358-61.

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55.  Dampier CD, Wager CG, Harrison R, et al; Investigators of the Sickle Cell Disease Clinical Research Network (SCDCRN). Impact of PCA strategies on pain intensity and functional assessment measures in adults with sickle cell disease during hospitalized vaso-occlusive episodes. Am J Hematol. 2012 Oct;87(10):E71-4.

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56.  Vichinsky EP, Neumayr LD, Earles AN, et al. Causes and outcomes of the acute chest syndrome in sickle cell disease. National Acute Chest Syndrome Study Group. N Engl J Med. 2000 Jun 22;342(25):1855-65.

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57.  Oringanje C, Nemecek E, Oniyangi O. Hematopoietic stem cell transplantation for people with sickle cell disease. Cochrane Database Syst Rev. 2016 May 19;(5):CD007001.

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58.  Gluckman E, Cappelli B, Bernaudin F, et al. Sickle cell disease: an international survey of results of HLA-identical sibling hematopoietic stem cell transplantation. Blood. 2017 Mar 16;129(11):1548-56.

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59.  Hsieh MM, Kang EM, Fitzhugh CD, et al. Allogeneic hematopoietic stem-cell transplantation for sickle cell disease. N Engl J Med. 2009 Dec 10;361(24):2309-17.

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60.  Bolaños-Meade J, Fuchs EJ, Luznik L, et al. HLA-haploidentical bone marrow transplantation with posttransplant cyclophosphamide expands the donor pool for patients with sickle cell disease. Blood. 2012 Nov 22;120(22):4285-91.

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61.  Martí-Carvajal AJ, Solà I, Agreda-Pérez LH. Treatment for avascular necrosis of bone in people with sickle cell disease. Cochrane Database Syst Rev. 2016 Aug 9;(8):CD004344.

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62.  Smith WR, Penberthy LT, Bovbjerg VE, et al. Daily assessment of pain in adults with sickle cell disease. Ann Intern Med. 2008 Jan 15;148(2):94-101.

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63.  Anie KA, Green J. Psychological therapies for sickle cell disease and pain. Cochrane Database Syst Rev. 2015 May 8;(5):CD001916.

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64.  US Food and Drug Administration. FDA drug safety communication: FDA restricts use of prescription codeine pain and cough medicines and tramadol pain medicines in children; recommends against use in breastfeeding women. April 2017 [internet publication].

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68.  ClinicalTrials.gov. Efficacy and safety of rivipansel (GMI-1070) in the treatment of vaso-occlusive crisis in hospitalized subjects with sickle cell disease. August 2018 [internet publication].

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72.  Ohene-Frempong K, Weiner SJ, Sleeper LA, et al. Cerebrovascular accidents in sickle cell disease: rates and risk factors. Blood. 1998 Jan 1;91(1):288-94.

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74.  Miller ST, Jensen D, Rao SP. Less intensive long-term transfusion therapy for sickle cell anemia and cerebrovascular accident. J Pediatr. 1992 Jan;120(1):54-7.

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75.  Estcourt LJ, Fortin PM, Hopewell S, et al. Blood transfusion for preventing primary and secondary stroke in people with sickle cell disease. Cochrane Database Syst Rev. 2017 Jan 17;(1):CD003146.

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76.  Hulbert ML, McKinstry RC, Lacey JL, et al. Silent cerebral infarcts occur despite regular blood transfusion therapy after first strokes in children with sickle cell disease. Blood. 2011 Jan 20;117(3):772-9.

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77.  Estcourt LJ, Fortin PM, Hopewell S, et al. Interventions for preventing silent cerebral infarcts in people with sickle cell disease. Cochrane Database Syst Rev. 2017 May 13;(5):CD012389.

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84.  Bonatsos G, Birbas K, Toutouzas K, et al. Laparoscopic cholecystectomy in adults with sickle cell disease. Surg Endosc. 2001 Aug;15(8):816-9.

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89.  Myint KT, Sahoo S, Thein AW, et al. Laser therapy for retinopathy in sickle cell disease. Cochrane Database Syst Rev. 2015 Oct 9;(10):CD010790.

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97.  Lottenberg R, Hassell KL. An evidence-based approach to the treatment of adults with sickle cell disease. Hematology Am Soc Hematol Educ Program. 2005:58-65.

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98.  Mantadakis E, Cavender JD, Rogers ZR, et al. Prevalence of priapism in children and adolescents with sickle cell anemia. J Pediatr Hematol Oncol. 1999 Nov-Dec;21(6):518-22.

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99.  Phebus CK, Gloninger MF, Maciak BJ. Growth patterns by age and sex in children with sickle cell disease. J Pediatr. 1984 Jul;105(1):28-33.

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101.  Meerpohl JJ, Schell LK, Rücker G, et al. Deferasirox for managing transfusional iron overload in people with sickle cell disease. Cochrane Database Syst Rev. 2014 May 27;(5):CD007477.

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102.  World Health Organization. Medical eligibility for contraceptive use. Geneva: World Health Organization; 2014.

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103.  Haddad LB, Curtis KM, Legardy-Williams JK, et al. Contraception for individuals with sickle cell disease: a systematic review of the literature. Contraception. 2012 Jun;85(6):527-37.

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