Testing the feasibility of a National Spina Bifida Patient Registry

Birth Defects Research Part A - Clinical and Molecular Teratology

Volumn 97, Issue 1, 2013, Pages 36-41

  Thibadeau, Judy K ^a   Ward, Elisabeth A ^a   Soe, Minn M ^a   Liu, Tiebin ^a   Swanson, Mark ^a   Sawin, Kathleen J ^b   Freeman, Kurt A ^c   Castillo, Heidi ^d   Rauen, Karen ^e   Schechter, Michael S ^f  

^a CENTERS FOR DISEASE CONTROL AND PREVENTION   (United States)

^b UNIVERSITY OF WISCONSIN MILWAUKEE   (United States)

^c OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^d UNIVERSITY OF CINCINNATI COLLEGE OF MEDICINE   (United States)

^e Children's Hospital of Wisconsin   (United States)

^f EMORY UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

Quality improvement; Registry; Research; Spina bifida; Spina bifida clinic

Indexed keywords

ADOLESCENT; ADULT; AFRICAN AMERICAN; AGE DISTRIBUTION; ARTICLE; CHILD; CONTROLLED STUDY; DISEASE REGISTRY; ELECTRONIC MEDICAL RECORD; FATTY FILUM; FEASIBILITY STUDY; FEMALE; GEOGRAPHIC DISTRIBUTION; HEALTH CENTER; HISPANIC; HUMAN; LIPOMYELOMENINGOCELE; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION SYSTEM; MENINGOCELE; MENINGOMYELOCELE; PRESCHOOL CHILD; PRIORITY JOURNAL; PUBLIC HEALTH SERVICE; QUALITY CONTROL; SCHOOL CHILD; SEX RATIO; SPINAL DYSRAPHISM; WEB BROWSER;

EID: 84872397663     PISSN: 15420752     EISSN: 15420760     Source Type: Journal    
DOI: 10.1002/bdra.23094     Document Type: Article

References (15)

1. Arts DG, De Keizer NF, Scheffer GJ. 2002. Defining and improving data quality in medical registries: a literature review, case study, and generic framework. J Am Med Inform Assoc 9: 600-611.
2. Bowman RM, McLone DG, Grant JA, et al. 2001. Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg 34:114-120.
3. Byrne BJ, Kishnani PS, Case LE, et al. 2011. Pompe disease: design, methodology, and early findings from the Pompe Registry. Mol Genet Metab 103:1-11.
4. Dillon CM, Davis BE, Duguay S, et al. 2000. Longevity of patients born with myelomeningocele. Eur J Pediatr Surg 10 Suppl 1: 33-34.
5. Gliklich RE, Dreyer NA, 2010 editors. Registries for evaluating patient outcomes: a user's guide. 2nd ed. Sept. (Prepared by Outcome DEcIDE Center [Outcome Sciences, Inc. d/b/a Outcome] under Contract No. HHSA29020050035I TO3.) AHRQ Publication No. 10-EHC049. Rockville, MD: Agency for Healthcare Research and Quality.
6. Goss CH, Mayer-Hamblett N, Kronmal RA, Ramsey BW. 2002. The cystic fibrosis therapeutics development network (CF TDN): a paradigm of a clinical trials network for genetic and orphan diseases. Adv Drug Deliv Rev 54:1505-1528.
7. Kaufman BA, Terbrock A, Winters N, et al. 1994. Disbanding a multidisciplinary clinic: effects on health care of myelomeningocele patients. Pediatr Neurosurg 21:36-44.
8. Kinsman SL, Doehring MC. 1996. The cost of preventable conditions in adults with spina bifida. Eur J Pediatr Surg 6 Suppl 1: 17-20.
9. Liu T, Valdez R, Ward B, et al. 2012, March. National spina bifida registry (NSBR): development of a data management and quality control system. Poster session presented at the Second World Congress on Spina Bifida Research and Care, Las Vegas, Nevada.
10. Morgan WJ, Butler SM, Johnson CA, et al. 1999. Epidemiologic study of cystic fibrosis: design and implementation of a prospective, multicenter, observational study of patients with cystic fibrosis in the U.S. and Canada. Pediatr Pulmonol 28: 231-241.
11. Pugeat M. 2004. Advances in growth hormone therapy: a new registry tool. Horm Res 62 Suppl 4:2-7.
12. Schechter MS. 2008. Patient registry analyses: seize the data, but caveat lector. J Pediatr 153: 733-735.
13. Soe M, Thibadeau J, Ward E. 2011, October. 'Report Functionality' tool: a single summary screen for real-time data validation. Poster session presented at the American Public Health Association meeting, Washington, D.C.
14. Versel N. 2010. What's in the data? Hemaware. Available at: Accessed: October 4, 2012. http://www.hemaware.org/print/448
15. Williams LJ, Rasmussen SA, Flores A, et al. 2005. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995-2002. Pediatrics 116: 580-586.