Difference between revisions of "Registries"
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Revision as of 01:50, 17 October 2018
A registry is as a database containing uniform, clinical information about people. Registires are used to evaluate specified outcomes for a population defined by a particular disease or condition. Information is collected in a systematic and comprehensive way to serve a predetermined scientific, clinical, or policy purpose.
Registries can be used for administrative operations, clinical trials, longitudinal observational studies (patient registries), disease management, genetic testing, and medical devices to name a sample few.
Examples of Registries
An example of Administrative Registry would be an admit, discharge and transfer (ADT) portion of the electronic health record (EHR). This can be called the patient or person registry and contains information on patient registration and encounters. This registry then can share information with other parts of the EHR such as financial, clinical or ancillary systems.
Clinical Trials Registries provide information on clinical trials on many conditions and diseases. The National Institute of Health (NIH) has a website that is searchable covering public and private trials from around the world. It can be found at http://clinicaltrials.gov/. There is also a registry set up in trying to match those seeking to be in a clinical trial and those researches conducting clinical trials looking for volunteers to be in their study. Research Match can be found at 
Longitudinal Observational Study Registries can also be searched for through the NIH affiliated website clinicaltrials.gov.  These studies can be searched by using the advanced search feature and choosing observational as study type.
Disease Management Registries are used to help manage populations with specific diseases. Diabetes, hypertension, and renal failure are a few of the chronic diseases that can be managed more effectively through these applications. The high percentage of patients living with chronic diseases today has spurred the need use evidence based medicine to improve outcomes and lower health care costs associated with these chronic diseases. Some of these registries are available through state level organizations, for example, Washington State created a program called Chronic Disease Electronic Management System (CDEMS) in 2002. This software is/was available for download and use through their website . These programs can often be a first step into transitioning into EHR requirements for pay for performance incentives.
The NIH also started a Genetic Testing Registry in 2011 for the purpose of sharing information on genetic tests, their methodology, purpose and validity. The tests usefulness, laboratory performing it and contact information can all be searched at this site .
Medical Device Registries are a useful tool in determining the effectiveness of processes and outcomes. Currently the FDA oversees the registry for medical devices in the US and anyone who manufactures or distributes devices intended to be sold must register it annually through them. Devices are risk stratified, and the highest risk devices, class 3 (ie- heart valves, breast implants, etc.) must undergo pre-market approval with scientific reviews evaluating safety. These devices are also required to be reported on post-market if there are malfunctions or serious injuries related to the device. . There is currently ongoing debate on having a medical device registry looking at outcomes to help in evidence based medical guidelines.
Submitted by(Jessica Roeske)
- Gliklich RE, Dreyer NA, eds. Registries for Evaluating Patient Outcomes: A User’s Guide. (Prepared by Outcome DEcIDE Center [Outcome Sciences, Inc. dba Outcome] under Contract No. HHSA29020050035I TO1.) AHRQ Publication No. 07-EHC001-1. Rockville, MD: Agency for Healthcare Research and Quality.April 2007.
- Press release from Harvard school of public health on March 25th 2009, Available from: http://www.hsph.harvard.edu/news/press-releases/2009-releases/us-hospitals-extremely-slow-to-adopt-electronic-health-records.html
- Ortiz DD, Fam Pract Manag. 2006 Apr;13(4):47-8, 51-2.”Using a simple patient registry to improve your chronic disease care”, Available from: http://www.aafp.org/fpm/2006/0400/p47.html
- HL7 Version 3 Standard: Patient Administration (also known as ADT - Admit, Discharge, and Transfer; Encounter Management; Administrative Registries). Retrieved from: http://www.hl7.org/implement/standards/product_brief.cfm?product_id=92
- Washington State Diabetes Connection, viewed at http://diabetes.doh.wa.gov/partners-1/cdems-rainshadow-technology-solutions
- Genomics Law Report, “Evaluating the NIH’s New Genetic Testing Registry” posted by Dan Vorhaus, March 18, 2010. Accessed at: http://www.genomicslawreport.com/index.php/2010/03/18/evaluating-the-nihs-new-genetic-testing-registry/
- Lamph, Susan. (April 2012) Regulation of Medical Devices Outside The European Union. Journal of the Royal Society of Medicine. vol. 105 no. Suppl. 1 S12-S21 doi: 10.1258/jrsm.2012.120037 J R Soc Med April 2012 vol. 105 no. suppl 1 S12-S21
Amended by: (Cindi Feldman)