Pediatric Research and Informatics

  • Harold P. Lehmann
  • Paul A. Law
  • Allen Y. Tien
Part of the Health Informatics book series (HI)


Pediatric research seeks to improve and optimize child health through scientific exploration and translation of the products and results of research into clinical practice. With advances in research methods and technology, scientists are progressively able to address new and persistent problems in clinical medicine, quality improvement, health services, public and population health and bioinformatics as well as in new domains. Current federal interest in speeding knowledge translation from laboratory to clinical practice to improve outcomes has led to the study of the improvement and optimization of the research process itself, and how translation and adoption of best practices occurs within the health community. As health care research and technologies to save and prolong life evolve, even more questions arise regarding the wisdom, responsibility, and the equity of their use, to protect children and their rights and the rights of their families.


Autism Spectrum Disorder Autism Spectrum Disorder Pediatric Research American Medical Informatics Association Kennedy Krieger Institute 


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  1. 1.
    US Food and Drug Administration. Guidances, Information Sheets, and Important Notices on Good Clinical Practice in FDA-Regulated Clinical Trials; 2008. Available at: Accessed December 21, 2008.
  2. 2.
    Downs SM, Wallace M Y. Mining association rules from a pediatric primary care decision support system. AMIA Annu Symp. 2000:200–204.Google Scholar
  3. 3.
    Chae YM, Kim HS, Tark KC, Park HJ, Ho SH. Analysis of healthcare quality indicator using data mining and decision support system. Expert Syst Appl. 2003;24(2):167–172.CrossRefGoogle Scholar
  4. 4.
    American Academy of Pediatrics. Clinical Practice Guidelines. Available at: Accessed December 20, 2008.
  5. 5.
    Agency for Healthcare Research and Quality. National Guideline Clearinghouse. Rockville, MD; 2008. Available at: Accessed December 20, 2008.
  6. 6.
    The Cochrane Collaboration. Cochrane Collaboration Website; 2008. Available at: Accessed December 20, 2008.
  7. 7.
    Higgins JPT, Green S. Cochrane Handbook for Systematic Reviews of Interventions. Oxfordshire, UK: Wiley.Google Scholar
  8. 8.
    Cochrane Child Health Field. Cochrane Child Health Website, Edmonton, Alberta, CANADA; 2008. Available at: Accessed December 20, 2008.
  9. 9.
    National Library of Medicine. PubMed Clinical Queries; 2008. Available at: Accessed December 20, 2008.
  10. 10.
    National Library of Medicine. OLDMEDLINE; 2008. Available at: Accessed December 20, 2008.
  11. 11.
    Elsevier.; 2008. Available at: Accessed December 20, 2008.
  12. 12.
    Pharsight Corporation. Pharsight Knowledgebase Server; 2008. Available at: Accessed December 20, 2008.
  13. 13.
    Cambridge University, MRC Biostatistics Unit. The BUGS Project; 2008. Available at: Accessed December 20, 2008.
  14. 14.
    National Health Service's National Institute for Health and Clinical Excellence. Paediatric Guidances; 2008. Available at: Accessed December 20, 2008.
  15. 15.
    Claxton KP, Sculpher MJ. Using Value of Information Analysis to Prioritise Health Research: Some Lessons from Recent UK Experience. Pharmaco Economics. 2006;24(11):1055–1068.CrossRefGoogle Scholar
  16. 16.
    National Institutes of Health ERA Commons. Computer Retrieval of Information on Scientific Projects (CRISP) Database; 2008. Available at: Accessed December 20, 2008.
  17. 17.
    National Library of Medicine.; 2008. Available at: Accessed December 20, 2008.
  18. 18.
    Tauberer J. H.R. 3043–110th Congress: Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2008. Available at: Accessed December 20, 2008.
  19. 19.
    National Institutes of Health Office of the Budget. IC Distribution of FY 2008 Enacted Level With Supplemental; 2008. Available at: Accessed December 20, 2008.
  20. 20.
    Swinscow TDV. Statistics at Square One. BMJ; 1997. Available at: Accessed December 20, 2008.
  21. 21.
    Modgil S, Hammond P. Decision support tools for clinical trial design. Artif Intell Med. 2007;27(2):181–200.CrossRefGoogle Scholar
  22. 22.
    Chuang JH, Hripcsak G, Heitjan DF. Design and analysis of controlled trials in naturally clustered environments: implications for medical informatics. J Am Med Inform Assoc. 2002;9(3):230–238.PubMedCrossRefGoogle Scholar
  23. 23.
    Goldfarb NM. Save the planet: eIRB solutions for everyone. J Clin Res Best Prac. 2006;2(2). Available at: Accessed December 20, 2008.
  24. 24.
    CureSearch. Cancer Oncology Group. Our Research; 2005. Available at: Accessed December 20, 2008.
  25. 25.
    Interactive Autism Network. Research; 2006. Available at: Accessed December 20, 2008.
  26. 26.
    Office for Civil Rights. HIPAA: Medical Privacy - National Standards to Protect the Privacy of Personal Health Information; 2008. Available at: Accessed December 20, 2008.
  27. 27.
    Shalowitz D, Wendler D. Informed consent for research and authorization under the Health Insurance Portability and Accountability Act Privacy Rule: an integrated approach. Ann Intern Med. 2006;144(9):685–688.PubMedGoogle Scholar
  28. 28.
    Barnard J, Fine D. The HIPAA Privacy Rule and its impact on pediatric research. J Pediatr Gastroenterol Nutr. 2003;37(5):527.PubMedCrossRefGoogle Scholar
  29. 29.
    Dunlop AL, Graham T, Leroy Z, Glanz K, Dunlop B. The impact of HIPAA authorization on willingness to participate in clinical research. Ann Epidemiol. 2007;17(11):899–905.PubMedCrossRefGoogle Scholar
  30. 30.
    Wipke-Tevis DD, Pickett MA. Impact of the Health Insurance Portability and Accountability Act on participant recruitment and retention. West J Nurs Res. 2008;30(1):39–53.PubMedCrossRefGoogle Scholar
  31. 31.
    National Institutes of Health. How Can Covered Entities Use and Disclose Protected Health Information for Research and Comply with the Privacy Rule?; 2008 Available at: Accessed December 20, 2008.
  32. 32.
    Malin BA. An evaluation of the current state of genomic data privacy protection technology and a roadmap for the future. J Am Med Inform Assoc. 2005;12(1):28–34.PubMedCrossRefGoogle Scholar
  33. 33.
    Masys D. Research and the HIPAA Security Rule. Association of American Medical Colleges; 2005. Available at: Accessed July 21, 2008.
  34. 34.
    American Academy of Pediatrics. Pediatric Research in Office Settings (PROS); 2008. Available at: Accessed December 20, 2008.
  35. 35.
    Barkin SL, Finch SA, Ip EH, Scheindlin B, Craig JA, Steffes J, et al. Is office-based counseling about media use, timeouts, and firearm storage effective? Results from a cluster-randomized, controlled trial. Pediatr. 2008;122(1):e15–e25.CrossRefGoogle Scholar
  36. 36.
    Boston University Slone Epidemiology Network. Slone Center Office-based Research (SCOR) Network; 2008. Available at: Accessed December 20, 2008.
  37. 37.
    Vernacchio L, Vezina RM, Mitchell AA. Management of acute otitis media by primary care physicians: trends since the release of the 2004 American Academy of Pediatrics/American Academy of Family Physicians clinical practice guideline. Pediatr. 2007;120(2):281–287.CrossRefGoogle Scholar
  38. 38.
    Hilbrich L, Sleight P. Progress and problems for randomized clinical trials: from streptomycin to the era of megatrials. Eur Heart J. 2006;27(18):2158–2164.PubMedCrossRefGoogle Scholar
  39. 39.
    Shelby-James TM, Abernethy AP, McAlindon A, Currow DC. Handheld computers for data entry: high tech has its problems too. Trials. 2007;8:5.PubMedCrossRefGoogle Scholar
  40. 40.
    National Cancer Institute. caBIG: Cancer Biomedical Informatics Grid; 2008. Available at: Accessed December 20, 2008.
  41. 41.
    National Institutes of Health. Clinical and Translational Science Awards: Translating Discoveries to Medical Practice; 2008. Available at: Accessed December 20, 2008.
  42. 42.
    Clinical and Translational Science Awards. Informatics; 2008. Available at: Accessed December 20, 2008.
  43. 43.
    Boyd CE, Meade RD. Clinical trial billing compliance at academic medical centers. Acad Med. 2007;82(7):646–653.PubMedCrossRefGoogle Scholar
  44. 44.
    Roberts EM, English PB, Wong M, et al. Progress in pediatric asthma surveillance II: geospa-tial patterns of asthma in Alameda County, California. Prev Chronic Dis. 2006;3(3):A92.PubMedGoogle Scholar
  45. 45.
    Biomed Central. Frequently asked questions about BioMed Central's article-processing charges; 2008. Available at: Accessed December 20, 2008.
  46. 46.
    National Institutes of Health. NIH Public Access; 2008. Available at: Accessed December 20, 2008.
  47. 47.
    Glover SW, Webb A, Gleghorn C. Open access publishing in the biomedical sciences: could funding agencies accelerate the inevitable changes? Health Info Libr J. 2006;23(3):197–202.PubMedCrossRefGoogle Scholar
  48. 48.
    American Medical Informatics Association. Global Trial Bank; 2006. Available at: Accessed December 20, 2008.
  49. 49.
    Sim I, Carini S, Olasov B, Jeng S. Trial bank publishing: phase I results. MEDINFO. 2004;11(Pt 2):1476–1480.Google Scholar
  50. 50.
    Thompson TG, Brailer DJ. The Decade of Health Information Technology: Delivering Consumer-Centric and Information-Rich Health Care. Bethesda, MD: DHHS; 2004.Google Scholar
  51. 51.
    Office of the National Coordinator. The ONC-Coordinated Federal Health IT Strategic Plan: 2008–2012. Bethesda, MD: National Insitutes of Health; 2008.Google Scholar
  52. 52.
    Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC, et al. Toward a national framework for the secondary use of health data: an american medical informatics association white paper. J Am Med Inform Assoc: JAMIA. 2007;14(1):1–9.PubMedCrossRefGoogle Scholar
  53. 53.
    Paperny DM, Aono JY, Lehman RM, Hammar SL, Risser J. Computer-assisted detection and intervention in adolescent high-risk health behaviors. J Pediatrics. 1990;116(3):456–462.CrossRefGoogle Scholar
  54. 54.
    Wagner TH, Greenlick MR. When parents are given greater access to health information, does it affect pediatric utilization? Med Care. 2001;39(8):848–855.PubMedCrossRefGoogle Scholar
  55. 55.
    Williams MD, Gish KW, Giuse NB, Sathe NA, Carrell DL. The Patient Informatics Consult Service (PICS): an approach for a patient-centered service. Bull Med Libr Assoc. 2001;89(2):185–193.PubMedGoogle Scholar
  56. 56.
    D'Alessandro DM, Kreiter CD, Kinzer SL, Peterson MW. A randomized controlled trial of an information prescription for pediatric patient education on the internet. Arch Pediatr Adolesc Med. 2004;158(9):857–862.PubMedCrossRefGoogle Scholar
  57. 57.
    Ellen JM, Gaydos C, Chung SE, Willard N, Lloyd LV, Rietmeijer CA. Sex partner selection, social networks, and repeat sexually transmitted infections in young men: a preliminary report. Sex Transm Dis. 2006;33(1):18–21.PubMedCrossRefGoogle Scholar
  58. 58.
    Bollmer JM, Milich R, Harris MJ, Maras MA. A friend in need: the role of friendship quality as a protective factor in peer victimization and bullying. J Interpers Violence. 2005;20(6):701–712.PubMedCrossRefGoogle Scholar
  59. 59.
    Hutchinson DM, Rapee RM. Do friends share similar body image and eating problems? The role of social networks and peer influences in early adolescence. Behav Res Ther. 2007;45(7):1557–1577.PubMedCrossRefGoogle Scholar
  60. 60.
    Hall JA, Valente TW. Adolescent smoking networks: the effects of influence and selection on future smoking. Addict Behav. 2007;32(12):3054–3059.PubMedCrossRefGoogle Scholar
  61. 61.
    Valente TW, Hoffman BR, Ritt-Olson A, Lichtman K, Johnson CA. Effects of a social-network method for group assignment strategies on peer-led tobacco prevention programs in schools. Am J Public Health. 2003;93(11):1837–1843.PubMedCrossRefGoogle Scholar
  62. 62.
    Landrigan PJ, Trasande L, Thorpe LE, et al. The National Children's Study: a 21-year prospective study of 100,000 American children. Pediatrics. 2006;118(5):2173–2186.PubMedCrossRefGoogle Scholar
  63. 63.
    Hirtz DG, Gilbert PR, Terrill CM, Buckman S Y. Clinical trials in children—How are they implemented? Pediatr Neurol. 2006;34(6):436–438.PubMedCrossRefGoogle Scholar
  64. 64.
    Gentleman R. Reproducible research: a bioinformatics case study. Stat Appl Genet Mol Biol. 2005;4: Article 2.Google Scholar
  65. 65.
    Bova GS, Eltoum IA, Kiernan JA, Siegal GP, Frost AR, Best CJ, et al. Optimal molecular profiling of tissue and tissue components: defining the best processing and microdissection methods for biomedical applications. Mol Biotechnol. 2005;29(2):119–152.PubMedCrossRefGoogle Scholar
  66. 66.
    Lehmann HP, Goodman SN. Bayesian communication: a clinically significant paradigm for electronic publication. J Am Med Inform Assoc.: JAMIA. 2000;7(3):254–266.PubMedGoogle Scholar
  67. 67.
    Cheung KH, Yip KY, Townsend JP, Scotch M. HCLS 2.0/3.0: health care and life sciences data mashup using Web 2.0/3.0. J Biomed Inform. 2008;41(5):694–705.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  • Harold P. Lehmann
    • Paul A. Law
      • 1
    • Allen Y. Tien
      • 2
      • 3
    1. 1.The Johns Hopkins School of MedicineBaltimore
    2. 2.The Johns Hopkins University School of MedicineBaltimore
    3. 3.President and Research DirectorMedical Decision Logic IncBaltimore

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