Abstract
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.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Preview
Unable to display preview. Download preview PDF.
References
US Food and Drug Administration. Guidances, Information Sheets, and Important Notices on Good Clinical Practice in FDA-Regulated Clinical Trials; 2008. Available at: http://www.fda.gov/oc/gcp/guidance.html. Accessed December 21, 2008.
Downs SM, Wallace M Y. Mining association rules from a pediatric primary care decision support system. AMIA Annu Symp. 2000:200–204.
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.
American Academy of Pediatrics. Clinical Practice Guidelines. Available at: http://aappolicy.aappublications.org/practice_guidelines/index.dtl. Accessed December 20, 2008.
Agency for Healthcare Research and Quality. National Guideline Clearinghouse. Rockville, MD; 2008. Available at: http://www.guideline.gov/. Accessed December 20, 2008.
The Cochrane Collaboration. Cochrane Collaboration Website; 2008. Available at: http://www.cochrane.org/. Accessed December 20, 2008.
Higgins JPT, Green S. Cochrane Handbook for Systematic Reviews of Interventions. Oxfordshire, UK: Wiley.
Cochrane Child Health Field. Cochrane Child Health Website, Edmonton, Alberta, CANADA; 2008. Available at: http://www.cochranechildhealth.ualberta.ca/index.html. Accessed December 20, 2008.
National Library of Medicine. PubMed Clinical Queries; 2008. Available at: http://www.ncbi.nlm.nih.gov/entrez/query/static/clinical.shtml. Accessed December 20, 2008.
National Library of Medicine. OLDMEDLINE; 2008. Available at: http://www.nlm.nih.gov/databases/databases_oldmedline.html. Accessed December 20, 2008.
Elsevier. Embase.com; 2008. Available at: http://www.embase.com/. Accessed December 20, 2008.
Pharsight Corporation. Pharsight Knowledgebase Server; 2008. Available at: http://www.pharsight.com/main.php. Accessed December 20, 2008.
Cambridge University, MRC Biostatistics Unit. The BUGS Project; 2008. Available at: http://www.mrc-bsu.cam.ac.uk/bugs/. Accessed December 20, 2008.
National Health Service's National Institute for Health and Clinical Excellence. Paediatric Guidances; 2008. Available at: http://www.nice.org.uk/search/guidancesearchresults.jsp?keywords=paediatric&searchType=guidance. Accessed December 20, 2008.
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.
National Institutes of Health ERA Commons. Computer Retrieval of Information on Scientific Projects (CRISP) Database; 2008. Available at: http://crisp.cit.nih.gov/. Accessed December 20, 2008.
National Library of Medicine. ClinicalTrials.gov; 2008. Available at: http://clinicaltrials.gov/. Accessed December 20, 2008.
Tauberer J. GovTrack.us: H.R. 3043–110th Congress: Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2008. Available at: http://govtrack.us. Accessed December 20, 2008.
National Institutes of Health Office of the Budget. IC Distribution of FY 2008 Enacted Level With Supplemental; 2008. Available at: http://officeofbudget.od.nih.gov/ui/fy2008elws.html. Accessed December 20, 2008.
Swinscow TDV. Statistics at Square One. BMJ; 1997. Available at: http://www.bmj.com/statsbk. Accessed December 20, 2008.
Modgil S, Hammond P. Decision support tools for clinical trial design. Artif Intell Med. 2007;27(2):181–200.
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.
Goldfarb NM. Save the planet: eIRB solutions for everyone. J Clin Res Best Prac. 2006;2(2). Available at: http://firstclinical.com/journal/2006/0602_eIRB.pdf. Accessed December 20, 2008.
CureSearch. Cancer Oncology Group. Our Research; 2005. Available at: http://www.cure-search.org/our_research/. Accessed December 20, 2008.
Interactive Autism Network. Research; 2006. Available at: https://www.ianresearch.org/. Accessed December 20, 2008.
Office for Civil Rights. HIPAA: Medical Privacy - National Standards to Protect the Privacy of Personal Health Information; 2008. Available at: http://www.hhs.gov/ocr/hipaa/consumer_rights.pdf. Accessed December 20, 2008.
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.
Barnard J, Fine D. The HIPAA Privacy Rule and its impact on pediatric research. J Pediatr Gastroenterol Nutr. 2003;37(5):527.
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.
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.
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: http://privacyruleandresearch.nih.gov/pr_08.asp. Accessed December 20, 2008.
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.
Masys D. Research and the HIPAA Security Rule. Association of American Medical Colleges; 2005. Available at: http://www.aamc.org/members/gir/hipaa/researchsecurityrule.pdf. Accessed July 21, 2008.
American Academy of Pediatrics. Pediatric Research in Office Settings (PROS); 2008. Available at: http://www.aap.org/pros/. Accessed December 20, 2008.
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.
Boston University Slone Epidemiology Network. Slone Center Office-based Research (SCOR) Network; 2008. Available at: http://www.bu.edu/slone/Research/Studies/SCOR/SCOR.htm. Accessed December 20, 2008.
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.
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.
Shelby-James TM, Abernethy AP, McAlindon A, Currow DC. Handheld computers for data entry: high tech has its problems too. Trials. 2007;8:5.
National Cancer Institute. caBIG: Cancer Biomedical Informatics Grid; 2008. Available at: https://cabig.nci.nih.gov/. Accessed December 20, 2008.
National Institutes of Health. Clinical and Translational Science Awards: Translating Discoveries to Medical Practice; 2008. Available at: http://www.ctsaweb.org/. Accessed December 20, 2008.
Clinical and Translational Science Awards. Informatics; 2008. Available at: http://www.ctsaweb.org/index.cfm?fuseaction=committee.viewCommittee&com_ID=9. Accessed December 20, 2008.
Boyd CE, Meade RD. Clinical trial billing compliance at academic medical centers. Acad Med. 2007;82(7):646–653.
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.
Biomed Central. Frequently asked questions about BioMed Central's article-processing charges; 2008. Available at: http://www.biomedcentral.com/info/about/apcfaq#howmuch. Accessed December 20, 2008.
National Institutes of Health. NIH Public Access; 2008. Available at: http://publicaccess.nih.gov/. Accessed December 20, 2008.
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.
American Medical Informatics Association. Global Trial Bank; 2006. Available at: http://www.amia.org/gtb/. Accessed December 20, 2008.
Sim I, Carini S, Olasov B, Jeng S. Trial bank publishing: phase I results. MEDINFO. 2004;11(Pt 2):1476–1480.
Thompson TG, Brailer DJ. The Decade of Health Information Technology: Delivering Consumer-Centric and Information-Rich Health Care. Bethesda, MD: DHHS; 2004.
Office of the National Coordinator. The ONC-Coordinated Federal Health IT Strategic Plan: 2008–2012. Bethesda, MD: National Insitutes of Health; 2008.
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.
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.
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.
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.
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.
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.
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.
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.
Hall JA, Valente TW. Adolescent smoking networks: the effects of influence and selection on future smoking. Addict Behav. 2007;32(12):3054–3059.
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.
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.
Hirtz DG, Gilbert PR, Terrill CM, Buckman S Y. Clinical trials in children—How are they implemented? Pediatr Neurol. 2006;34(6):436–438.
Gentleman R. Reproducible research: a bioinformatics case study. Stat Appl Genet Mol Biol. 2005;4: Article 2.
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.
Lehmann HP, Goodman SN. Bayesian communication: a clinically significant paradigm for electronic publication. J Am Med Inform Assoc.: JAMIA. 2000;7(3):254–266.
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.
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2009 Springer Science+Business Media, LLC
About this chapter
Cite this chapter
Lehmann, H.P., Law, P.A., Tien, A.Y. (2009). Pediatric Research and Informatics. In: Lehmann, C.U., Kim, G.R., Johnson, K.B. (eds) Pediatric Informatics. Health Informatics. Springer, New York, NY. https://doi.org/10.1007/978-0-387-76446-7_34
Download citation
DOI: https://doi.org/10.1007/978-0-387-76446-7_34
Publisher Name: Springer, New York, NY
Print ISBN: 978-0-387-76445-0
Online ISBN: 978-0-387-76446-7
eBook Packages: MedicineMedicine (R0)