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Items: 1 to 20 of 23

1.

Care Coordination for Children With Sickle Cell Disease: A Longitudinal Study of Parent Perspectives and Acute Care Utilization.

Rattler TL, Walder AM, Feng H, Raphael JL.

Am J Prev Med. 2016 Jul;51(1 Suppl 1):S55-61. doi: 10.1016/j.amepre.2016.01.023.

2.

A Mismatch Between Patient Education Materials About Sickle Cell Disease and the Literacy Level of Their Intended Audience.

McClure E, Ng J, Vitzthum K, Rudd R.

Prev Chronic Dis. 2016 May 12;13:E64. doi: 10.5888/pcd13.150478.

3.

Men with severe hemophilia in the United States: birth cohort analysis of a large national database.

Mazepa MA, Monahan PE, Baker JR, Riske BK, Soucie JM; US Hemophilia Treatment Center Network.

Blood. 2016 Jun 16;127(24):3073-81. doi: 10.1182/blood-2015-10-675140. Epub 2016 Mar 16.

4.

High quality, patient centred and coordinated care for Alstrom syndrome: a model of care for an ultra-rare disease.

Van Groenendael S, Giacovazzi L, Davison F, Holtkemper O, Huang Z, Wang Q, Parkinson K, Barrett T, Geberhiwot T.

Orphanet J Rare Dis. 2015 Nov 24;10:149. doi: 10.1186/s13023-015-0366-y.

5.

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

Stollon NB, Paine CW, Lucas MS, Brumley LD, Poole ES, Peyton T, Grant AW, Jan S, Trachtenberg S, Zander M, Bonafide CP, Schwartz LA.

J Pediatr Hematol Oncol. 2015 Nov;37(8):577-83. doi: 10.1097/MPH.0000000000000427.

PMID:
26492583
6.

Genetics in primary health care and the National Policy on Comprehensive Care for People with Rare Diseases in Brazil: opportunities and challenges for professional education.

Melo DG, de Paula PK, de Araujo Rodrigues S, da Silva de Avó LR, Germano CM, Demarzo MM.

J Community Genet. 2015 Jul;6(3):231-40. doi: 10.1007/s12687-015-0224-6. Epub 2015 Apr 18.

7.

A biopsychosocial model for the management of patients with sickle-cell disease transitioning to adult medical care.

Crosby LE, Quinn CT, Kalinyak KA.

Adv Ther. 2015 Apr;32(4):293-305. doi: 10.1007/s12325-015-0197-1. Epub 2015 Apr 2. Review.

8.

Impact of a dedicated infusion clinic for acute management of adults with sickle cell pain crisis.

Lanzkron S, Carroll CP, Hill P, David M, Paul N, Haywood C Jr.

Am J Hematol. 2015 May;90(5):376-80. doi: 10.1002/ajh.23961. Epub 2015 Feb 25.

9.

An interdisciplinary approach to personalized medicine: case studies from a cardiogenetics clinic.

Erskine KE, Griffith E, Degroat N, Stolerman M, Silverstein LB, Hidayatallah N, Wasserman D, Paljevic E, Cohen L, Walsh CA, McDonald T, Marion RW, Dolan SM.

Per Med. 2013 Jan 1;10(1):73-80.

10.

Primary care role in expanded newborn screening: After the heel prick test.

Hayeems RZ, Miller FA, Carroll JC, Little J, Allanson J, Bytautas JP, Chakraborty P, Wilson BJ.

Can Fam Physician. 2013 Aug;59(8):861-8.

11.

Impact of neonatal screening and surveillance for the TP53 R337H mutation on early detection of childhood adrenocortical tumors.

Custódio G, Parise GA, Kiesel Filho N, Komechen H, Sabbaga CC, Rosati R, Grisa L, Parise IZ, Pianovski MA, Fiori CM, Ledesma JA, Barbosa JR, Figueiredo FR, Sade ER, Ibañez H, Arram SB, Stinghen ST, Mengarelli LR, Figueiredo MM, Carvalho DC, Avilla SG, Woiski TD, Poncio LC, Lima GF, Pontarolo R, Lalli E, Zhou Y, Zambetti GP, Ribeiro RC, Figueiredo BC.

J Clin Oncol. 2013 Jul 10;31(20):2619-26. doi: 10.1200/JCO.2012.46.3711. Epub 2013 Jun 3.

12.

Mortality rates and age at death from sickle cell disease: U.S., 1979-2005.

Lanzkron S, Carroll CP, Haywood C Jr.

Public Health Rep. 2013 Mar-Apr;128(2):110-6.

13.

Youth with special health care needs: transition to adult health care services.

Oswald DP, Gilles DL, Cannady MS, Wenzel DB, Willis JH, Bodurtha JN.

Matern Child Health J. 2013 Dec;17(10):1744-52. doi: 10.1007/s10995-012-1192-7.

14.

Emerging concepts about prenatal genesis, aberrant metabolism and treatment paradigms in polycystic ovary syndrome.

Witchel SF, Recabarren SE, González F, Diamanti-Kandarakis E, Cheang KI, Duleba AJ, Legro RS, Homburg R, Pasquali R, Lobo RA, Zouboulis CC, Kelestimur F, Fruzzetti F, Futterweit W, Norman RJ, Abbott DH.

Endocrine. 2012 Dec;42(3):526-34. doi: 10.1007/s12020-012-9701-4. Epub 2012 Jun 4. Review.

15.

The influence of the culture of care on informal caregivers' experiences.

Penrod J, Baney B, Loeb SJ, McGhan G, Shipley PZ.

ANS Adv Nurs Sci. 2012 Jan-Mar;35(1):64-76. doi: 10.1097/ANS.0b013e318244555a.

16.

Concentration of hospital care for acute sickle cell disease-related visits.

Panepinto JA, Owens PL, Mosso AL, Steiner CA, Brousseau DC.

Pediatr Blood Cancer. 2012 Oct;59(4):685-9. doi: 10.1002/pbc.24028. Epub 2011 Dec 16.

17.

Sickle cell disease in California: sociodemographic predictors of emergency department utilization.

Wolfson JA, Schrager SM, Khanna R, Coates TD, Kipke MD.

Pediatr Blood Cancer. 2012 Jan;58(1):66-73. doi: 10.1002/pbc.22979. Epub 2011 Feb 25.

18.

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative.

Auchus RJ, Witchel SF, Leight KR, Aisenberg J, Azziz R, Bachega TA, Baker LA, Baratz AB, Baskin LS, Berenbaum SA, Breault DT, Cerame BI, Conway GS, Eugster EA, Fracassa S, Gearhart JP, Geffner ME, Harris KB, Hurwitz RS, Katz AL, Kalro BN, Lee PA, Alger Lin G, Loechner KJ, Marshall I, Merke DP, Migeon CJ, Miller WL, Nenadovich TL, Oberfield SE, Pass KA, Poppas DP, Lloyd-Puryear MA, Quigley CA, Riepe FG, Rink RC, Rivkees SA, Sandberg DE, Schaeffer TL, Schlussel RN, Schneck FX, Seely EW, Snyder D, Speiser PW, Therrell BL, Vanryzin C, Vogiatzi MG, Wajnrajch MP, White PC, Zuckerman AE.

Int J Pediatr Endocrinol. 2010;2010:275213. doi: 10.1155/2010/275213. Epub 2011 Jan 10.

19.

The medical home concept and congenital adrenal hyperplasia: a comfortable habitat!

Witchel SF.

Int J Pediatr Endocrinol. 2010;2010:561526. doi: 10.1155/2010/561526. Epub 2010 Jun 8.

20.

Evaluation and management of pulmonary disease in ataxia-telangiectasia.

McGrath-Morrow SA, Gower WA, Rothblum-Oviatt C, Brody AS, Langston C, Fan LL, Lefton-Greif MA, Crawford TO, Troche M, Sandlund JT, Auwaerter PG, Easley B, Loughlin GM, Carroll JL, Lederman HM.

Pediatr Pulmonol. 2010 Sep;45(9):847-59. doi: 10.1002/ppul.21277.

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