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Multi-Institutional and Multidisciplinary Research Collaboration

Strategies and Lessons from Cooperative Trials
  • F. Daniel Armstrong
  • Dennis Drotar
Part of the Issues in Clinical Child Psychology book series (ICCP)

Abstract

Over the 30 years since the formal establishment of the field of pediatric psychology, a number of transformations have occurred that have affected the nature and focus of research in this field, some of which also are applicable to the field of clinical child psychology. Early publications in the Journal of Pediatric Psychology were based on observations described in case reports or single-subject designs. These reflected the growing awareness of the potential unexplored relationships between the behavioral and medical aspects of various diseases and the procedures used to treat them. As the field matured, research drifted away from the focus on individual cases and began to rely more on group designs and methodology. This focus resulted in a new set of difficulties, characterized by small, potentially nonrepresentative samples, broadband research with little consideration of specific disease, treatment, or developmental variations and restrictions on the types of research possible due to limited access to populations. In an effort to solve these problems, current efforts in pediatrics, including pediatric psychology, are moving toward increased research collaboration, both across institutions and across disciplines, although at a somewhat slow pace. Of the 186 empirical articles published in the Journal of Pediatric Psychology between January 1993 and August 1997, only 10 (5%) involved collaborations that included data collection at multiple institutions. Thus, while there is evidence of multisite collaboration occurring in the field, it is still in its relative infancy. To promote a better understanding of this approach, it is our intention to identify several models of multisite collaborative research, pointing out the benefits and pitfalls that may be encountered.

Keywords

Sickle Cell Disease Collaborative Research Research Collaboration Cooperative Group Multicenter Research 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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References

  1. American Psychological Association. (1992). Ethical principles of psychologists and code of conduct. American Psychologist.Google Scholar
  2. Armstrong, F. D. (1995). Commentary: Childhood cancer. Journal of Pediatric Psychology, 4, 417–421.CrossRefGoogle Scholar
  3. Armstrong, F. D., Toledano, S. R., Miloslovich, K., Lackman-Zeman, L., Levy, J. D., Gay, C. L., Schuman, W. B., & Fishkin, P. (in press). The Miami Pediatric Quality of Life Questionnaire: Parent Scale. International Journal of Cancer.Google Scholar
  4. Brocklehurst, P., Elbourne, D., Garcia, T., & McCandlish, R. (1996). Clinical trials and rare diseases: Trials of adequate size are possible with the right organization. British Medical Journal, 312, 910.PubMedCrossRefGoogle Scholar
  5. Brown, R. T., Armstrong, F. D., & Eckman, J. R. (1993). Neurocognitive aspects of sickle cell disease. Journal of Learning Disabilities, 26, 33–45.PubMedCrossRefGoogle Scholar
  6. Chordokoff, J., & Whitten, C. F. (1963). Intellectual status of children with sickle cell anemia. Journal of Pediatrics, 63, 29–35.CrossRefGoogle Scholar
  7. Crooks, S. W., Colman, S. B., & Campbell, I. A. (1996). Costs and getting ethical approval deter doctors from participating in multicentre trials. British Medical Journal, 312, 1669.PubMedCrossRefGoogle Scholar
  8. Davies, H. D., Langley, J. M., & Speert, D. P. (1996). Rating authors’ contributions to collaborative research: The PICNIC survey of university departments of pediatrics. Canadian Medical Association Journal, 155, 877–882.PubMedGoogle Scholar
  9. Diabetes Control and Complications Trial Research Group. (1993). The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. New England Journal of Health, 329, 977–986.CrossRefGoogle Scholar
  10. Drotar, D. (1993). Influences on collaborative activities among psychologists and pediatricians: Implications for practice, training, and research. Journal of Pediatric Psychology, 18, 159–172.PubMedCrossRefGoogle Scholar
  11. Drotar, D. (1995). Consulting with pediatricians: Psychological perspectives. New York: Plenum Press.Google Scholar
  12. Drotar, D., Agle, D. P., Eckl, C.L., & Thompson, P. A. (1996). Impact of the repressive personality style on the measurement of psychological distress in children and adolescents with chronic illness: An example from hemophilia. Journal of Pediatric Psychology, 21, 283–293.PubMedCrossRefGoogle Scholar
  13. Farber, M. D., Koshy, M., & Kinney, T. R. (1985). Cooperative Study of Sickle Cell Disease: Demographic and socioeconomic characteristics of patients and families with sickle cell disease. Journal of Chronic Diseases, 38, 495–505.PubMedCrossRefGoogle Scholar
  14. Fowler, M. G., Whitt, J. K., Lallanger, R. R., Nash, K. B., Atkinson, S. S., Wells, R. J., & McMillan, C. (1988). Neuropsychologic and academic functioning of children with sickle cell anemia. Journal of Developmental and Behavioral Pediatrics, 9, 213–220.PubMedCrossRefGoogle Scholar
  15. Gaston, M., Smith, J., Gallagher, D., Flournoy-Gill, Z., West, S., Bellevue, R., Farber, M., Graver, R., Koshy, M., Ritchey, A. K., et al. (198 7). Recruitment in the Cooperative Study of Sickle Cell Disease (CSSCD). Controlled Clinical Trials, 8, 131S–140S.CrossRefGoogle Scholar
  16. Gonzalez, J. C., Routh, D. K., Saab, P. E., Armstrong, F. D., Guerra, E., Shifman, L., & Fawcett, N. (1989). Effects of parent presence on children’s reactions to injections: Behavioral, physiological, and subjective aspects. Journal of Pediatric Psychology, 14, 449–462.PubMedCrossRefGoogle Scholar
  17. Hardy, M. S., Armstrong, F. D., Routh, D. K., Albrecht, J., & Davis, J. (1994). Coping and communication among parents and children with human immunodeficiency virus and cancer. Journal of Developmental and Behavioral Pediatrics, 15, S49–S53.PubMedCrossRefGoogle Scholar
  18. Hillgartner, M. W., Donfield, S. M, Willoughby, A., Contant, C. F. Jr., Evatt, B. L., Gomperts, E. D., Hoots, W. K., Jason, J., Loveland, K. A., McKinlay, S. M., & Stehbens, J. A. (1993). Hemophilia growth and development study: Design, methods and entry data. American Journal of Pediatric Hematology Oncology, 15, 208–218.CrossRefGoogle Scholar
  19. International Committee of Medical Journal Editors. (1994). Uniform requirements for manuscripts submitted to biomedical journals. Philadelphia: American College of Physicians.Google Scholar
  20. Kazak, A. E., Penati, B., Boyer, B. A., Himelstein, B., Brophy, P., Waibel, M. K., Blackall, G. F., Daller, R., & Johnson, K. (1996). A randomized controlled prospective outcome study of a psychological and pharmacological intervention protocol for procedural distress in pediatric leukemia. Journal of Pediatric Psychology, 21, 615–632.PubMedCrossRefGoogle Scholar
  21. Lantz, J., Reed, R. C, & Lewkowitz, S. (1994). Collaborative research-academic appointments: The myth and reality. Nursing Administration Quarterly, 18, 38–43.PubMedGoogle Scholar
  22. Lemanek, K. L., Horwitz, W., & Ohene-Frempong, K. (1994). A multiperspective investigation of social competence in children with sickle cell disease. Journal of Pediatric Psychology, 19, 443–456.PubMedCrossRefGoogle Scholar
  23. Loveland, K. A., Stehbens, J., Contant, C., Bordeaux, J. D., Sirois, P., Bell, T. S., Hill, S., Scott, A., Bowman, M., Schiller, M., Watkins, J., Olson, R., Moylan, P., Cool, V., & Beiden, B. (1994). Hemophilia growth and development study: Baseline neurodevelopmental findings. Journal of Pediatric Psychology, 19, 223–239.PubMedCrossRefGoogle Scholar
  24. Morrow, G. R., & Bellig, A. J. (1994). Behavioral science in translational research and cancer control. Cancer, 74, 1409–1417.PubMedCrossRefGoogle Scholar
  25. Onufrak, B., Saylor, C. F., Taylor, M. J., Eyberg, S. M., & Boyce, G. C. (1995). Determinants of responsiveness in mothers of children with intraventricular hemorrhage. Journal of Pediatric Psychology, 20, 587–599.PubMedCrossRefGoogle Scholar
  26. Pediatric Oncology Group. (1992). Progress against childhood cancer: The Pediatric Oncology Group experience. Pediatrics, 89, 597–600.Google Scholar
  27. Pegelow, C. H., Armstrong, F. D., Light, S., Toledano, S. R., & Davis, J. (1991). Experience with the use of prophylactic penicillin in children with sickle cell anemia. Journal of Pediatrics, 118, 736–738.PubMedCrossRefGoogle Scholar
  28. Quittner, A. L., Tolbert, V. E., Regoli, M. J., Orenstein, D. M., Hollingsworth, J. L., & Eigen, H. (1996). Development of the Role-play Inventory of Situations and Coping Strategies for parents of children with cystic fibrosis. Journal of Pediatric Psychology, 21, 209–235.PubMedCrossRefGoogle Scholar
  29. Rosendorf, L. L., Dafni, U., Amato, D. A., Lunghofer, B., Bartlett, J. G., Leedom, J. M., Wara, D. W., Armstrong, J. A., Godfrey, E., Sukkestad, E., & Cunts, G. W. (1993). Performance evaluation in multicenter clinical trials: Development of a model by the AIDS Clinical Trials Group. Controlled Clinical Trials, 14, 523–537.PubMedCrossRefGoogle Scholar
  30. Sargent, J. R., Sahler, O. J. Z., Roghmann, K. J., Mulhern, R. K., Barbarian, O. A., Carpenter, P. J., Copeland, D. R., Dolgin, M. J., & Zeltzer, L. K. (1995). Sibling Adaptation of Childhood Cancer Study: Siblings’ perceptions of the cancer experience. Journal of Pediatric Psychology, 20, 151–164.PubMedCrossRefGoogle Scholar
  31. Smyth, J. F., Mossman, J., Hall, R., Hepburn, S., Pinkerton, R., Richards, M., Thatcher, N., & Box, J. (1994). Conducting clinical research in the new NHS: The model of cancer. British Medical Journal, 309, 457–461.PubMedCrossRefGoogle Scholar
  32. Snyder, C. R., Hoza, B., Pelham, W. E., Rapoff, M., Ware, L., Danovsky, Highberger, L., Rubinstein, H., & Stahl, K. J. (1997). Journal of Pediatric Psychology, 22, 399–421.PubMedCrossRefGoogle Scholar
  33. Stowe, S. M., Hammond, G. D., Chard, R., Hornberger, J. A., Honour, R. C., Sposto, R., & Weiner, J. M. (1984). Monitoring clinical research. A report from the Children’s Cancer Study Group. American Journal of Clinical Oncology, 7, 557–566.PubMedCrossRefGoogle Scholar
  34. Swift, A. V., Cohen, M. J., Hynd, G. W., Wisenbaker, J. M., McKie, K. M., Makari, G., & McKie, V. (1989). Neuropsychological impairment in children with sickle cell anemia. Pediatrics, 84, 1077–1085.PubMedGoogle Scholar
  35. Thomas, A. M., Peterson, L., & Goldstein, D. (1997). Problem solving and diabetes regimen adherence by children and adolescents with IDDM in social pressure situations: A reflection of normal development. Journal of Pediatric Psychology, 22, 541–561.PubMedCrossRefGoogle Scholar
  36. US Department of Health and Human Services, Public Health Service. (1997). Grant Application (PHS 398). OMB No. 0925-0001.Google Scholar

Copyright information

© Springer Science+Business Media New York 2000

Authors and Affiliations

  • F. Daniel Armstrong
    • 1
  • Dennis Drotar
    • 2
  1. 1.Department of PediatricsUniversity of Miami, School of MedicineMiamiUSA
  2. 2.Department of PediatricsRainbow Babies and Children’s HospitalClevelandUSA

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