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Clinical research databases—A historical review

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Abstract

The increasing importance of computer-stored databases for clinical research prompted a historical review of their evolution over the past three decades. The special problems associated with the computer processing of clinical research data were reviewed, and the various types of clinical research registers and databases were described.

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References

  • Addison, C.H., Blackwell, P.W., Smith, W.E.,et al., GIPSY—General Information Processing System: Remote terminal users guide. Norman, OK: Univ. of Oklahoma. Univ of Oklahoma Information Science Series, Monograph No. 3, 1969.

    Google Scholar 

  • Ames, J.E., and Strawn, J.E., National database for the procurement and transplantation of kidneys.Proc SCAMC 743–746, 1987.

  • Ames, J.E., Strawn, J.E., and Vaughn, W.K., National database for the procurement and transplantation of non-renal organs.Proc SCAMC 508–511, 1988.

  • Banks, G., Caplan, L.R., and Hier, D.B., The Michael Reese stroke registry, a microcomputer-implemented data base.Proc SCAMC 724–727, 1983.

  • Basmajian, D., The Center for Health Services Research. Oakland, CA. Kaiser Permanente.Spectrum (Fall), 1–2, 1989.

  • Bean, L.L., May, D.L., and Skolnick, M., The Mormon historical demography project.Hist. Methods 11:45–53, 1978.

    Google Scholar 

  • Blois, M.S., Medical records and clinical databases: what is the difference.M.D. Comput. 1:24–28, 1984.

    Google Scholar 

  • Blum, R.L., and Wiederhold, G., Inferring knowledge from clinical data banks utilizing techniques from artificial intelligence.Proc. SCAMC 303–307, 1978.

  • Blum, R.L., Automating the study of clinical hypotheses on a time-oriented database: the RX project.Proc MEDINFO 456–460, 1980.

  • Bokuski, M., Correlating gene linkage maps with physical maps of chromosomes. National Library of Medicine News. 1989 (June–July):6.

  • Boyd, D.R., Lowe, R.J., Baker, R.J., and Nyhus, L.M., Trauma registry: New computer method for multi-factorial evaluation of a major health problem.JAMA 223:422–428, 1973.

    Google Scholar 

  • Breslow, L., Incidence of cancer in Alameda County, California, 1960–1964. Berkeley, CA: Calif State Dept of Health, 1967.

    Google Scholar 

  • Bruce, R.A., Gey, G.O., Cooper, M.N.,et al. Seattle Heart Watch: Initial clinical, circulatory and electro-cardiographic responses to maximal exercise.Am. J. Cardiol. 33:459–469, 1974.

    Google Scholar 

  • Bruce, R.A., Hossack, K.F., Belanger, L.,et al. A computer terminal program to evaluate cardiovascular functional limits and estimate coronary event risks.West. J. Med. 135:342–350, 1981.

    Google Scholar 

  • Cabral, R.M. and Cheng, W., An interactive database system for managing medical information: a tumor registry application.Proc. SCAMC 298–302, 1978.

  • Chaitman, B.R., Bourassa, M.G., Davis, K.,et al. Angiographic prevalence of high-risk coronary artery disease in patient subsets (CASS).Circulation 64:360–367, 1981.

    Google Scholar 

  • Chik, L., Sokol, J., Kooi, R.et al. A perinatal database management system.Methods Inform. Med. 20:133–141, 1981.

    Google Scholar 

  • Chung, C.S., Genetic analyis of family and population data with use of digital computers. Proc 3rd IBM Med Symposium. Endicott, NY: IBM, 53–67, 1961.

    Google Scholar 

  • Coffman, G.A., and Mezzich, J.E., Research use of a general psychiatric data base.Proc. SCAMC 721–723, 1983.

  • Cope, C.B., A centralized nation-wide patient data system. InRecord Linkage in Medicine (E.D. Acheson, ed.), E. & S. Livingstone, Edinburgh, 1968, pp. 34–38.

    Google Scholar 

  • Cutler, S.J., The use of tumor registry data.Calif. Med. 106:98–107, 1967.

    Google Scholar 

  • Detre, K., Holubkov, R., Kelsey, S.,et al. Percutaneous transluminal coronary angioplasty in 1985–1986 and 1977–1981; The National Heart, Lung, and Blood Institute Registry.New Engl. J. Med. 318:265–270, 1988.

    Google Scholar 

  • Dintleman, S.M., Maness, A.T., Skolnick, M.H., and Bean, L.L., GENISYS: A geneological information system. InGeneological Demography (B. Dyke, ed.), Academic Press, New York, 1980, pp. 95–114.

    Google Scholar 

  • Dozier, J.A., Hammond, W.E., and Stead, W.W., Creating a link between medical and analytical databases.Proc. SCAMC 478–482, 1985.

  • ECRI. Implant recalls—Do hospitals notify recipients.ECRI Health Tech Trends 1:7, 1989.

    Google Scholar 

  • Engelke, S.C., Paulette, E.W., and Kopelman, A.E., Neonatal information system using an interactive microcomputer data base management program.Proc. SCAMC 284–285, 1981.

  • Feigl, P., Breslow, N.E., Laszlo, J.,et al. The U.S. centralized cancer patient data system for uniform communication among cancer centers.J. Natl. Cancer Inst. 67:1017–1024, 1981.

    Google Scholar 

  • Fisher, L.D., Killip, T., Mock, M.B.,et al. Coronary Artery Surgery Study (CASS): A randomized trial of coronary artery bypass surgery; survival data.Circulation 68:939–950, 1983[a]

    Google Scholar 

  • Fisher, L.D., Killip, T., Mock, M.B.,et al. Coronary Artery Surgery Study (CASS): A randomized trial of coronary artery bypass surgery; quality of life in patients randomly assigned to treatment groups.Circulation 68:951–960, 1983[b].

    Google Scholar 

  • Friedman, G.D., Collen, M.F., Harris, L.,et al. Experience in monitoring drug reactions in outpatients.JAMA 217:567–572, 1971.

    Google Scholar 

  • Friedman, G.D., Screening criteria for drug monitoring: The Kaiser Permanente drug reaction monitoring system.J. Chronic Dis. 25:11–20, 1972.

    Google Scholar 

  • Friedman, G.D., and Ury, H.K., Screening for possible drug carginogenicity: Second report of findings.J. Natl. Cancer Inst. 71:1165–1175, 1983.

    Google Scholar 

  • Friedman, G.D., Computer data bases in epidemiological research.Proc. AAMSI 389–392, 1984.

  • Fries, J.F., Time-oriented patient records and a computer databank.JAMA 222:1536–1542, 1972.

    Google Scholar 

  • Fries, J.F., Hess, E., and Klinenberg, J.A., A standard database for rheumatic disease.Arch. Rheum. 17:327–336, 1974.

    Google Scholar 

  • Fries, J.F., and McShane, D., ARAMIS: A national chronic disease data bank system.Proc. SCAMC 798–801, 1979.

  • Fries, J.F., The chronic disease data bank: First principles to future directions.J. Med. Philos. 9:161–180, 1984.

    Google Scholar 

  • Fries, J.F., and McShane, D.J., ARAMIS (The American Rheumatism Association Medical Information System), a prototypical national chronic-disease data bank.West. J. Med. 145:798–804, 1986.

    Google Scholar 

  • Gagnon D.E., and Schwartz, R.M., and Anderson, P.A., A national perinatal data base—An idea whose time has come.Proc. MEDINFO 572–574, 1986.

  • Gardner, D.W., and Klatchko, D.M., A microcomputer based diabetic patient registry for patient management and clinical research.Proc. SCAMC 87–89, 1985.

  • Gersting, J.M., Conneally, P.M., and Beidelman, K., Huntington's disease research roster support with a microcomputer database management system.Proc. SCAMC 746–749, 1983.

  • Greene, S.B., and Gunselman, D.L., The conversion of claims files to an episode data base: A tool for management and research.Inquiry 21:189–194, 1984.

    Google Scholar 

  • Gross, C.R., and Dambrosia, J.M., Quality assurance for clinical data banks.Proc, SCAMC 317–321, 1981.

  • Grover, J., Spellacy, W., Winegar, A.,et al. Utilization of the University of Illinois regional perinatal database in three areas.Proc. AAMSI 144–147, 1983.

  • Hlatky, M.A., Califf, R.M., Kong, Y.,et al. Natural history of patients with single-vessel disease suitable for percutaneous transluminal coronary angioplasty.Am. J. Cardiol. 52:225–229, 1983.

    Google Scholar 

  • Horm, J.W., Asire, A.J., Young, J.L., and Pollack, E.S., SEER Program: cancer incidence and morality in the United States, 1973–81. Bethesda, Md. NIH Pub. No. 85-1837; 1985.

  • Jennett, R.J., Gall, D., Waterkotte, G.W., and Warford, H.S., A computerized perinatal data system for a region.Am. J. Obstet. Gyncol. 131:157–161, 1978.

    Google Scholar 

  • Jick, H., Miettinen, O.S., Shapiro, S.,et al. Comprehensive drug surveillance.JAMA 213:1455–1460, 1970.

    Google Scholar 

  • Johnston, H.B., Higgins, S.B., Harris, T.R., and Lacy, W.W., Five years experience with the CLINFO data base management and analysis system.Proc. SCAMC 833–836, 1982.

  • Kang, K. W., Merritt, A.D., Conneally, P.M.,et al. A medical genetics data base management system.Proc. SCAMC 524–529, 1978.

  • Katz, B., Clinical research system.MD Comput. 3:53–55, 1986.

    Google Scholar 

  • Karpinski, R.H.S., and Bleich, H.L., MISAR: A miniature information storage and retrieval system.Comput. Biomed. Res. 4:655–660, 1971.

    Google Scholar 

  • Kent, K.M., Coronary angioplasty: A decade of experience.New Engl. J. Med. 316:1148–1149, 1987.

    Google Scholar 

  • Kent, K.M., Bentivoglio, L.G., Block, P.C.,et al. Percutaneous transluminal coronary angioplasty: report from the registry of the National Heart, Lung, and Blood Institute.Am. J. Cardiol. 49:2011–2020, 1982.

    Google Scholar 

  • Kern, S.E., Fearon, E.R., Kasper, W.F.,et al. Allelic loss in colorectal cancer.JAMA 261:3099–3103, 1989.

    Google Scholar 

  • Killip, T., Fisher, L.D., and Mock, M.B., National Heart, Lung, and Blood Institute Coronary Artery Surgery Study.Circulation 63(supp I):I-1–I-39, 1981.

    Google Scholar 

  • King, C., Strong, R.M., and Donovan, K., MEDUS/A: 1983 status of a database system for research and patient care.Proc. SCAMC 709–711, 1983.

  • Kingsland, L.C., RDBS: Research data base system for microcomputers; coding technique and file structures.Proc. AAMSI 85–89, 1982.

  • Kolata, G., Bone marrow registry needs help. San Francisco Chronicle 1989 Dec. 11.

  • Kong, D.F., Lee, K.L., Harrell, F.E.,et al. Clinical experience and predicting survival in coronary disease.Arch. Int. Med. 149:1177–1181, 1989.

    Google Scholar 

  • Kraus, J.F., Greenland, S., and Bulterys, M., Risk factors for sudden infant death syndrome in the US collaborative perinatal project.Int. J. Epidemiol. 18:113–120, 1969.

    Google Scholar 

  • Kronmal, R.A., Davis, K., Fisher, L.D.,et al. Data management for a large collaborative clinical trial (Cass: Coronary artery surgery study).Comput. Biomed. Res. 11:553–566, 1978.

    Google Scholar 

  • Kunitz, S.C., Fishman, I.G., and Gross, C.R., Attributes of data banks for clinical research: An experience-based approach.Proc. SCAMC 837–841, 1982.

  • Kurland, L.T., and Molgaard, C.A., The patient record in epidemiology.Scientific Amer. 245:54–63, 1981.

    Google Scholar 

  • Laszlo, J., Bailar, J.C., and Mosteller, F., Registers and data bases. InAssessing Medical Technologies (F. Mosteller,et al. eds.), National Academy Press, Washington, D.C., 1985[a], pp. 101–109.

    Google Scholar 

  • Laszlo, J., Health registry and clinical data base technology; with special emphasis on cancer registries.J. Chronic Dis. 38:67–78, 1985[b].

    Google Scholar 

  • Layard, M.W., and McShane, D.L., Applications of MEDLOG, a microcomputer-based system for time-oriented data.Proc. SCAMC 731–734, 1983.

  • Lincoln, T.L., Groner, G.F., Quinn, J.J., and Lukes, R.J., The analysis of functional studies in acute lymphocytic leukaemia using CLINFO—A small computer information and analysis system for clinical investigators. In (M. Laudet, J. Anderson, and F. Begon, eds.),Medical Data Processing. Proc Internatl Symposium IRIA. Taylor & Francis Ltd., London, 1976.

    Google Scholar 

  • Lomatch, D., Truax, T., and Savage, P., Use of a relational database to support clinical research: Application in a diabetes program.Proc. SCAMC 291–295, 1981.

  • Marciniak, T.A., Leahey, C.F., Zufall, E.,et al. Information systems in oncology.Proc. MEDINFO 508–512, 1986.

  • Merz, B., 700 genes mapped at world workshop.JAMA 262:175, 1989.

    Google Scholar 

  • Mesel, E., and Wirtschafter, D.D., Automating ambulatory medical records; a claims-based medical profile.Comput. Biomed. Res. 9:89–91, 1976.

    Google Scholar 

  • McKinlay, S.M., Carleton, R.A., McKenney, J.L., and Assaf, A.R., A new approach to surveillance for acute myocardial infarction: Reproducibility and cost efficiency.Int. J. Epidemiol 16:67–83, 1989.

    Google Scholar 

  • McKusick, V.A., Some computer applications to problems in human genetics.Proc. 6th IBM Med Symposium, IBM, Poughkeepsie, N.Y. 1964, pp. 207–217.

    Google Scholar 

  • McKusick, V.A., and Cross, H.E., Geneological linkage of records for two isolate populations. InRecord Linkage in Medicine (E.D. Acheson, ed.), E. & S. Livingstone, Edinburgh, 1968, 263–268.

    Google Scholar 

  • McKusick, V.A., Mendelian Inheritance in Man; catalogs of automosomal dominant, autosomal recessive, and X-linked phenotypes (eighth edition), The Johns Hopkins University Press, Baltimore, 1988.

    Google Scholar 

  • McKusick, V.A., Forty years of medical genetics.JAMA 261:3155–3158, 1989.

    Google Scholar 

  • Miller, P.B., and Strong, R.M., Clinical care and research using MEDUS/A, a medically oriented data base management system.Proc, SCAMC 288–297, 1978.

  • Miller, R.A., Kapoor W.N., and Peterson, J., The use of relational databases as a tool for conducting clinical studies.Proc. SCAMC 705–708, 1983.

  • Morgan, M.M., Beaman, P.D., Shusman, D.L.,et al. Medical query language.Proc. SCAMC 322–325, 1981.

  • Murphy, E.A., and Schulze, J., A program for estimation of genetic linkage in man.Proc. 3rd IBM Med. Symp. IBM, Endicott, N.Y., 1961, pp. 107–116.

    Google Scholar 

  • Murphy, E.A., and Sherwin, R.W., Estimation of genetic linkage: An outline.Methods Inform. Med. 5:45–54, 1966.

    Google Scholar 

  • Myers, R.S., and Slee, V.N., Medical statistics tell the story at a glance.Modern Hospital 1959.

  • NCHSR program note, U.S. Govt. Printing Office: No. 1989-241-274/00022;2, Washington, D.C.

  • NCI preliminary report third national cancer survey, 1969 incidence. Biometry Branch, National Cancer Institute, Bethesda, Md., 1971.

  • Nichols, B.J., Rush, R.L., Moss, P.J.,et al. Data entry for multiple center data banks—a microprocessor approach.Proc. SCAMC 307–310, 1981.

  • NIH-DRR: General Clinical Research Centers, A Research Resources Directory, seventh revised edition. Div. of Res Resources, NIH, Bethesda, Md., 1988.

  • Ostroff, S.M., Kobayashi, J.M., and Lewis, J.H., Infections with Escherichia coli 0157:H7 in Washington State; the first year of statewide disease surveillance.JAMA 262:355–357, 1989.

    Google Scholar 

  • PAS Information Brochure. Ann Arbor, MI: Commission on Professional and Hospital Activities, 1963.

  • Phillips, W., Record linkage for a chronic disease register. InRecord Linkage in Medicine (E.D. Acheson, ed.), E. & S. Livingstone, Edinburgh, 1968, pp. 120–151.

    Google Scholar 

  • Pollack, D.A., and McClain, P.W., Trauma registries: Current status and future prospects.JAMA 262:2280–2285, 1989.

    Google Scholar 

  • Pollak, V.E., Buncher, R., and Donovan, E.R., Online computerized data handling system for treating patients with renal disease.Arch. Int. Med. 137:446–456, 1977.

    Google Scholar 

  • Priore, R.L., Lane, W.W., Edgerton, F.T.,et al. RPMIS: The Roswell Park management information system.Proc. SCAMC 566–580, 1978.

  • Prokosch, H.U., Seuchter, S.A., Thompson, E.A., and Skolnick, M.H., Applying expert system techniques to human genetics.Comput. Biomed. Res. 22:234–237, 1989.

    Google Scholar 

  • Pryor, D.B., Stead, W.W., Hammond, W.E.,et al. Features of TMR for a successful clinical and research database.Proc. SCAMC 79–84, 1982.

  • Pryor, D.B., Califf, R.M., Harrell, F.E.,et al. Clinical data bases: Accomplishments and unrealized potential.Med. Care 23:623–647, 1985.

    Google Scholar 

  • Rosati, R.A., Wallace, A.G., and Stead, E.A., The way of the future.Arch. Int. Med. 1973. 285–287, 131.

  • Rosati, R.A., Lee, K.L., Califf, R.M.,et al. Problems and advantages of an observational data base approach to evaluating the effect of therapy on outcome.Circulation 65(suppl. II):27–32, 1982.

    Google Scholar 

  • Sager, N., Chi, E.C., Tick, L.J., and Lyman, M., Relational database design for computer-analyzed medical narrative.Proc. SCAMC 797–804, 1982.

  • Seuchter, S.A., and Skolnick, M.H., HGDBMS: A human genetics database management system.Comput. Biomed. Res. 21:478–487, 1988.

    Google Scholar 

  • Shankar, B.S., Southard, J.W., Malone, S.J., and Cowley, R.A., Maryland disabled individual reporting system.Proc. SCAMC 117–119, 1985.

  • Shapiro, A.R., Exploratory analysis of the medical record.Proc. SCAMC 781–785, 1982.

  • Shusman, D.J., and Morgan, M.M., The medical query language.Proc. SCAMC 742–745, 1983.

  • Siegelaub, A.B., Friedman, G.D., Collen, M.F., and Kodlin, D. Research applications of MHTS. Chap 19 It Multiphasic Health Testing Services (M.F. Collen, ed.), Wiley, New York, 1978.

    Google Scholar 

  • Skolnick, M., The Utah geneological data base: A resource for genetic epidemiology. Banbury Report 4: Cancer Incidence in Defined Populations, Cold Spring Harbor Laboratory, 1980:285–297.

  • Slee, V.N., The normal tissue rate.Bull. Am. Coll. Surg. (May–June);47:108–111, 1962.

    Google Scholar 

  • Slee, V.N., Information systems and measurement tools.JAMA 196:111–113, 1966.

    Google Scholar 

  • Starmer, C.F., Rosati, R.A., and McNeer, F.M., Editorial: Data bank use in management of chronic diseases.Comput. Biomed. Res. 7:111–116, 1974.

    Google Scholar 

  • Starmer, C.F., and Rosati, R.A., Computer-based aid to managing patients with chronic illness.Computer 46–50, 1975.

  • Swyers, J.P., Genetic data base service. Research Resources Reporter. 13–14, 1989 (Dec).

  • Thacker, S.B., Choi, K., and Brachman, P.S., The surveillance of infectious diseases.JAMA 249:1181–1185, 1983.

    Google Scholar 

  • Thompson, H.K., Baker, W.R., Christopher, T.G.,et al. CLINFO, a research data management and analysis system acceptable to physician users.Proc. SCAMC 140–142, 1987.

  • Vallbona, C., Blose, W.F., and Spencer, W.A., System for processing clinical research data.Proc. 6th IBM Medical Symposium. IBM, Poughkeepsie, NY. 1964, pp. 437–485.

    Google Scholar 

  • Walker, A.M., Cody, R.J., Greenblatt, D.J., and Jick, H., Drug toxicity in patients receiving digoxin and quinidine.Am. Heart J. 105:1025–1028, 1983.

    Google Scholar 

  • Warford, H.S., Jennett, R.J., and Gall, D.A., A computerized perinatal data system.Med. Inform. 4:133–138, 1979.

    Google Scholar 

  • Wennberg, J.E., Roos, N., Sola, L.,et al. Use of claims data systems to evaluate health care outcomes.JAMA 257:933–936, 1987.

    Google Scholar 

  • Weyl, S., Fries, J., Wiederhold, G., and Germano, F., A modular self-describing clinical databank system.Comput. Biomed. Res. 8:279–293, 1975.

    Google Scholar 

  • Whiting-O'Keefe, Q., Strong, P.C., and Simborg, D.W., An automated system for coding data from summary time oriented record (STOR).Proc. SCAMC 735–737, 1983.

  • Young, J.L., Asire, A., and Pollock, E., SEER Program; cancer incidence and mortality in the United States 1973–1976. DHEW Pub. No. (NIH) 78-1837. National Cancer Institute, Bethesda, Md. 1976.

    Google Scholar 

  • Yusim, S., and Vallbona, C., Use of health-illness profile data base in health services research.Proc. MEDINFO 731–735, 1986.

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  1. From the Division of Research, Kaiser Permanente Medical Care Program, 3451 Piedmont Avenue, 94611, Oakland, California

    Morris F. Collen M.D.

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Collen, M.F. Clinical research databases—A historical review. J Med Syst 14, 323–344 (1990). https://doi.org/10.1007/BF00996713

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