Health information systems are the basis of eHealth at regional and national levels. They provide the maintenance of traditional medical documents in out-patient clinics and hospitals in electronic form. At the same time, specialized registries are monitoring systems for the health status of people with certain diseases. However, the creation of registers as independent information systems, which takes place to this day, is now inadvisable, since the necessary information can be obtained from the Electronic Healthcare Record/ Electronic Medical Record. In this case, specialized registers are implemented as virtual systems of a temporary or permanent type. Regarding patient registers, they integrate data from electronic medical records and information from patients or their relatives.
References
[1]
Knapp, E.A., Fink, A.K., Goss, C.H., Sewall, A., Ostrenga, J., Dowd, C., Elbert, A., Petren, K.M. and Marshall, B.C. (2016) The Cystic Fibrosis Foundation Patient Registry. Design and Methods of a National Observational Disease Registry. Annals of the American Thoracic Society, 13, 1173-1179.
https://www.ncbi.nlm.nih.gov/pubmed/27078236
https://doi.org/10.1513/AnnalsATS.201511-781OC
[2]
Aksamit, T.R., O’Donnell, A.E., Barker, A., Olivier, K.N., Winthrop, K.L., Daniels, L.A., Johnson, M., Eden, E., Griffith D., Knowles, M., Metersky, M., Salathe, M., Thomashow, B., Tino, G., Turino, G., Carretta, B. and Daley, C.L. (2017) Adult Patients with Bronchiectasis: A First Look at the US Bronchiectasis Research Registry. Chest, 151, 982-992. https://www.ncbi.nlm.nih.gov/pubmed/27889361
https://doi.org/10.1016/j.chest.2016.10.055
[3]
Martinez-Ramirez, D., Jimenez-Shahed, J., Leckman, J.F., Porta, M., Servello, D., Meng, F.-G., Kuhn, J., Huys, D., Baldermann, J.C., Foltynie, T., Hariz, M.I., Zrinzo, L., Kefalopoulou, Z., Silburn, P., Coyne, T., Mogilner, A.Y., Pourfar, M.H., Khandhar, S.M., Auyeung, M., Ostrem, J.L., Visser-Vandewalle, V., Welter, M.-L., Mallet, L., Karachi, C., Houeto, J.L., Klassen, B.T., Temel, Y., Gross, R.E., Walker, H.C., Lozano, A.M., Walter, B.L., Mari, Z., Anderson, W.S., Changizi, B.K., Moro, E., Zauber, S.E., Schrock, L.E., Zhang, J.-G., Hu, W., Rizer, K., Monari, E.H., Foote, K.D., Malaty, I.A., Deeb, W., Gunduz, A. and Okun, M.S. (2018) Efficacy and Safety of Deep Brain Stimulation in Tourette Syndrome. The International Tourette Syndrome Deep Brain Stimulation Public Database and Registry. Journal American Medical Association Neurology, 75, 353-359.
https://www.ncbi.nlm.nih.gov/pubmed/29340590
https://doi.org/10.1001/jamaneurol.2017.4317
[4]
Leslie, W.D., Johansson, H., McCloskey, E.V., Harvey, N.C., Kanis, J.A. and Hans, D. (2018) Comparison of Methods for Improving Fracture Risk Assessment in Diabetes: The Manitoba BMD Registry. Journal of Bone and Mineral Research, 33, 1923-1930. https://www.ncbi.nlm.nih.gov/pubmed/29953670
https://doi.org/10.1002/jbmr.3538
Grigoriev, O.G. and Molodcenkov, A.I. (2018) Risk Health Evaluation and Selection of Preventive Measures Plan with the Help of Argumental Algorithm. In: Kuznetsov, S., Osipov, G.S. and Stefanuk, V., Eds., Artificial Intelligence. RCAI 2018. Communications in Computer and Information Science, Springer, Cham, 280-290.
https://www.springer.com/gp/book/9783030006167
https://doi.org/10.1007/978-3-030-00617-4_26
[7]
Pawliczek, P., Patel, R.Y., Ashmore, L.R., Jackson, A.R., Bizon, C., Nelson, T., Powell, B., Freimuth, R.R., Strande, N., Shah, N., Paithankar S., Wright, M.W., Dwight, S., Zhen, J., Landrum, M., McGarvey, P., Babb, L., Plon, S.E. and Milosavljevic, A. (2018) ClinGen Allele Registry Links Information about Genetic Variants. Human Mutation, 39, 1690-1701. https://www.ncbi.nlm.nih.gov/pubmed/30311374
https://doi.org/10.1002/humu.23637
[8]
Kobrinskii, B.A. (2014) E-Health and Telemedicine: Current State and Future Steps. E-Health Telecommunication Systems and Networks, 3, 50-56.
https://file.scirp.org/pdf/ETSN_2014120511312331.pdf
https://doi.org/10.4236/etsn.2014.34007
[9]
Dawson, J., Tulu, B. and Horan, T.A. (2009) Towards Patient-Centered Care: The Role of E-Health in Enabling Patient Access to Health Information. In: Wilson, E.V., Ed., Patient-Centered E-Health, Information Science Reference Hershey, New York, 1-9. https://www.danangtimes.vn/Portals/0/Docs/112144754-1605660167.pdf
https://doi.org/10.4018/978-1-60566-016-5.ch001
[10]
Swindells, M. and De Lusignan, S. (2012) Lessons from the English National Programme for IT about Structure, Process and Utility. Studies in Health Technology and Informatics, 174, 17-22.
https://www.iospress.nl/book/large-scale-projects-in-ehealth/
[11]
Brooks, P. and Health, A. (2010) Standards and Interoperability in Healthcare Information Systems: Current Status, Problems, and Research Issues. Proceedings of the 5th Midwest Association for Information Systems Conference, Moorhead, MN, 21-22 May 2010, 18. http://aisel.aisnet.org/mwais2010/18
[12]
Wolf, S.M. and Evans, B.J. (2018) Return of Results and Data to Study Participants. Science, 362, 159-160. https://www.ncbi.nlm.nih.gov/pubmed/30309935
https://doi.org/10.1126/science.aav0005
[13]
Kobrinsky, B. (1995) Concept of the Continuum of Intermediate States of Development: Risk Factors in Child Health. Medical Audit News, 2, 21-22.
[14]
Bufalino, V.J., Masoudi, F.A., Stranne, S., Bufalino, V.J., Masoudi, F.A., Stranne, S.K., Horton, K., Albert, N.M., Beam, C., Bonow, R.O., Davenport, R.L., Girgus, M., Fonarow, G.C., Krumholz, H.M., Legnini, M.W., Lewis, W.R., Nichol, G., Peterson, E.D., Rumsfeld, J.S., Schwamm, L.H., Shahian, D.M., Spertus, J.A., Woodard, P.K. and Yancy, C.W. (2011) The American Heart Association’s Recommendations for Expanding the Applications of Existing and Future Clinical Registries: A Policy Statement from the American Heart Association. Circulation, 123, 2167-2179.
https://www.ncbi.nlm.nih.gov/pubmed/21482960
https://doi.org/10.1161/CIR.0b013e3182181529
[15]
Taruscio, D., Kodra, Y., Ferrari, G. and Vittozzi, L. (2014) The Italian National Rare Diseases Registry. Blood Transfusion, 12, s606-s613.
https://www.ncbi.nlm.nih.gov/pubmed/24922301
Feller, I. and Jones, C.A. (1987) The National Burn Information Exchange. The Use of a National Burn Registry to Evaluate and Address the Burn Problem. Surgical Clinics of North America, 67, 167-189.
https://www.sciencedirect.com/science/article/pii/S003961091644140X
https://doi.org/10.1016/S0039-6109(16)44140-X
[18]
Bradshaw, P.J., Ko, D.T., Newman, A.M., Donovan, L.R. and Tu, J.V. (2006) Validity of the GRACE (Global Registry of Acute Coronary Events) Acute Coronary Syndrome Prediction Model for Six Month Post-Discharge Death in an Independent Data Set. Heart, 92, 905-909. https://www.ncbi.nlm.nih.gov/pubmed/16387810
https://doi.org/10.1136/hrt.2005.073122
[19]
Gliklich. R., Dreyer, N. and Leavy, M. (2014) Registries for Evaluating Patient Outcomes: A User’s Guide. 3rd Edition, Agency for Healthcare Research and Quality Publication, Rockville, MD, 295.
https://effectivehealthcare.ahrq.gov/sites/default/files/related_files/registries-guide-3rd-edition-vol-2-140430.pdf
[20]
Bushby, K., Lynn, S. and Straub, V. (2009) Collaborating to Bring New Therapies to the Patient—The TREAT-NMD Model. Acta Myologica, 28, 12-15.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2859629/
[21]
Wraith, J.E., Beck, M., Giugliani, R., Clarke, J., Martin, R. and Muenzer, J. (2008) Initial Report from the Hunter Outcome Survey. Genetics in Medicine, 10, 508-516.
https://www.ncbi.nlm.nih.gov/pubmed/18580692
https://doi.org/10.1097/GIM.0b013e31817701e6
[22]
Lake, W.B., Brooks, N.P. and Resnick, D.K. (2013) Comparative Effectiveness Research in Spine Surgery. Journal of Comparative Effectiveness Research, 2, 45-51.
https://www.ncbi.nlm.nih.gov/pubmed/24236520
https://doi.org/10.2217/cer.12.73
[23]
Stevens, L.A., Palma, J.P., Pandher, K.K. and Longhurst, C.A. (2013) Immunization Registries in the EMR Era. Online Journal of Public Health Informatics, 5, 211.
https://www.ncbi.nlm.nih.gov/pubmed/23923096
https://doi.org/10.5210/ojphi.v5i2.4696
[24]
Deuschl, G., Jain, R., Wang, A. and Scholtes, H. (2019) Outcomes of a Prospective, Multicenter, International Registry of Deep Brain Stimulation for Parkinson’s Disease. Neurology, 92, 15.
https://n.neurology.org/content/92/15_Supplement/P1.8-039
[25]
Bellgard, M.I., Render, L., Radochonski, M. and Hunter, A. (2014) Second Generation Registry Framework. Source Code for Biology and Medicine, 9, 14-19.
https://scfbm.biomedcentral.com/articles/10.1186/1751-0473-9-14
https://doi.org/10.1186/1751-0473-9-14
[26]
Taruscio, D., Mollo, E., Gainotti, S., De la Paz, M.P., Bianchi, F. and Vittozzi, L. (2014) The EPIRARE Proposal of a Set of Indicators and Common Data Elements for the European Platform for Rare Disease Registration. Archives of Public Health, 72, 35-42. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4210567/
https://doi.org/10.1186/2049-3258-72-35
[27]
Messiaen, C., Le Mignot, L., Rath, A., Richard, J.B., Dufour, E., Ben Said, M., Jais, J.P., Verloes, A., Le Merrer, M., Bodemer, C., Baujat, G., Gerard-Blanluet, M., Bourdon-Lanoy, E., Salomon, R., Ayme, S. and Landais, P. (2008) CEMARA: A Web Dynamic Application within a N-Tier Architecture for Rare Diseases. Studies in Health Technology and Informatics, 136, 51-56.
https://www.ncbi.nlm.nih.gov/pubmed/18487707
https://doi.org/10.1016/j.respe.2008.02.096
[28]
EUCERD (2015) Minimum Data Set for Rare Disease Registries. EUCERD Joint Action WP8 TASK 8.1: Integration of Registry Activities.
http://www.eucerd.eu/wp-content/uploads/2015/03/WP8_Registries_MDS.pdf
[29]
Gliklich, R.E., Dreyer, N.A, Leavy, M.B. and Christian. J.B. (2018) Registries for Evaluating Patient Outcomes: A User’s Guide: 3rd Edition, Addendum. Agency for Healthcare Research and Quality, Rockville, MD, 103.
https://www.ncbi.nlm.nih.gov/pubmed/29708678
[30]
Grigoriev, O.G., Kobrinskii, B.A., Osipov, G.S., Molodchenkov, A.I. and Smirnov, I.V. (2018) Health Management System Knowledge Base for Formation and Support of a Preventive Measures Plan. Procedia Computer Science, 145, 238-241.
https://doi.org/10.1016/j.procs.2018.11.050
https://www.sciencedirect.com/science/article/pii/S1877050918323366
[31]
Burns, K.M., Bienemann, L., Camperlengo, L., Cottengim, C., Covington, T.M., Dykstra, H., Faulkner, M., Kobau, R., Lambert, A.B., MacLeod, H., Parks, S.E., Rosenberg, E., Russell, M.W., Shapiro-Mendoza, C.K., Shaw, E., Tian, N., Whittemore, V. and Kaltman, J.R. (2017) The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality. Pediatrics, 139, e20162757.
https://www.ncbi.nlm.nih.gov/pubmed/28228502
https://doi.org/10.1542/peds.2016-2757
[32]
Kelli, H.M., Witbrodt, B. and Shah, A. (2017) The Future of Mobile Health Applications and Devices in Cardiovascular Health. European Medical Journal Innovations, 1, 92-97. https://www.ncbi.nlm.nih.gov/pubmed/28191545
