title: Commentary: Launch of a quality improvement network for evidence-based management of uncommon pediatric endocrine disorders: Turner syndrome as a prototype.
abstract: BACKGROUND
  Traditional, hypothesis-oriented research approaches have thus far failed to generate sufficient evidence to achieve consensus about the management of children with many endocrine disorders, partly because of the rarity of these disorders and because of regulatory burdens unique to research in children.
  
  
  OBJECTIVE
  The Pediatric Endocrine Society is launching a quality improvement network in spring 2015 for the management of pediatric endocrine disorders that are relatively uncommon in any single practice and/or for which there is no consensus on management.
  
  
  METHODS
  The first of the quality improvement programs to be implemented seeks to improve the care of 11- to 17-year-old girls with Turner syndrome who require initiation of estrogen replacement therapy by providing a standardized clinical assessment and management plan (SCAMP) for transdermal estradiol treatment to induce pubertal development. The SCAMP algorithm represents a starting point within current best practice that is meant to undergo refinement through an iterative process of analysis of deidentified data collected in the course of clinical care by a network of pediatric endocrinologists.
  
  
  CONCLUSIONS
  It is anticipated that this program will not only improve care, but will also result in actionable data that will generate new research hypotheses and changes in management of pediatric endocrine disorders.
authors.affiliation: Section of Adult and Pediatric Endocrinology, Diabetes, and Metabolism (R.L.R., S.A.W.G.), The University of Chicago Pritzker School of Medicine, Chicago, Illinois 60637; Department of Pediatrics (L.A.D.), Indiana University School of Medicine, Indianapolis, Indiana 46202; Division of Endocrinology, Diabetes, and Metabolism (N.M.), Nemours Children's Clinic, Jacksonville, Florida 32207; Department of Pediatrics (J.R.), Jefferson University, Philadelphia, Pennsylvania 19107; Nemours/duPont Hospital for Children (J.R.), Wilmington, Delaware 19803; Reproductive Endocrine Unit (N.D.S.), Massachusetts General Hospital, Boston, Massachusetts 02114; Division of Endocrinology (N.D.S., E.T.R.), Boston Children's Hospital, Boston, Massachusetts 02115; Department of Pediatrics (M.H.), Children's Nutrition Research Center, Baylor College of Medicine, Houston, Texas 77030; Connecticut Children's Medical Center (K.R.), Hartford, Connecticut 06106; and University of Connecticut School of Medicine (K.R.), Farmington, Connecticut 06032.
authors.forename: Robert L
authors.initials: RL
authors.lastname: Rosenfield
authors.forename: Linda A
authors.initials: LA
authors.lastname: DiMeglio
authors.forename: Nelly
authors.initials: N
authors.lastname: Mauras
authors.forename: Judith
authors.initials: J
authors.lastname: Ross
authors.forename: Natalie D
authors.initials: ND
authors.lastname: Shaw
authors.forename: Siri A W
authors.initials: SA
authors.lastname: Greeley
authors.forename: Morey
authors.initials: M
authors.lastname: Haymond
authors.forename: Karen
authors.initials: K
authors.lastname: Rubin
authors.forename: Erinn T
authors.initials: ET
authors.lastname: Rhodes
mesh_terms: D000293:Adolescent; D000465:Algorithms; D002648:Child; D019058:Community Networks / Q000458:organization & administration / Q000592:standards; D004700:Endocrine System Diseases / Q000628:therapy*; D015914:Estrogen Replacement Therapy / Q000706:statistics & numerical data; D055317:Evidence-Based Practice / Q000458:organization & administration / Q000592:standards; D005260:Female; D006801:Humans; D058996:Quality Improvement / Q000458:organization & administration; D035583:Rare Diseases / Q000628:therapy; D012107:Research Design; D014424:Turner Syndrome / Q000628:therapy*
references.citation: J Clin Endocrinol Metab. 1973 Oct;37(4):574-80
references.pmid: 4742538
references.citation: BMJ. 2010 Jun 03;340:c2519
references.pmid: 20525678
references.citation: J Clin Endocrinol Metab. 2013 Apr;98(4):1591-601
references.pmid: 23457407
references.citation: J Clin Endocrinol Metab. 2000 Jul;85(7):2439-45
references.pmid: 10902791
references.citation: Gynecol Endocrinol. 1993 Dec;7(4):251-8
references.pmid: 8147234
references.citation: Int J Pediatr Endocrinol. 2011 Dec 30;2011(1):19
references.pmid: 22208165
references.citation: J Clin Endocrinol Metab. 2007 Jan;92(1):10-25
references.pmid: 17047017
references.citation: J Clin Endocrinol Metab. 2010 Jul;95(7 Suppl 1):s1-s66
references.pmid: 20566620
references.citation: J Pediatr Endocrinol Metab. 2006 Jan;19(1):55-64
references.pmid: 16509529
references.citation: J Thromb Haemost. 2010 Aug;8(8):1736-44
references.pmid: 20553380
references.citation: J Thromb Haemost. 2010 May;8(5):979-86
references.pmid: 20230416
references.citation: Congenit Heart Dis. 2010 Jul-Aug;5(4):343-53
references.pmid: 20653701
references.citation: J Clin Endocrinol Metab. 2013 Jul;98(7):2716-24
references.pmid: 23678038
references.citation: J Clin Endocrinol Metab. 2010 Apr;95(4):1487-95
references.pmid: 20375216
references.citation: N Engl J Med. 2011 Mar 31;364(13):1274-6
references.pmid: 21449792
references.citation: J Clin Endocrinol Metab. 2011 Nov;96(11):3502-10
references.pmid: 21880799
references.citation: BMJ. 2009 Aug 13;339:b2890
references.pmid: 19679613
references.citation: J Clin Endocrinol Metab. 2003 Mar;88(3):1119-25
references.pmid: 12629094
references.citation: N Engl J Med. 2012 Jun 14;366(24):2257-66
references.pmid: 22693997
references.citation: N Engl J Med. 2011 Mar 31;364(13):1230-42
references.pmid: 21449786
references.citation: J Clin Endocrinol Metab. 2005 Dec;90(12):6424-30
references.pmid: 16189255