Difference between revisions of "Registries"

From Clinfowiki
Jump to: navigation, search
m (Roeske moved page Registry to Registries)
(No difference)

Revision as of 01:43, 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 [1]

Longitudinal Observational Study Registries can also be searched for through the NIH affiliated website clinicaltrials.gov. [2] 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 [3]. 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 [4].

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. [5]. There is currently ongoing debate on having a medical device registry looking at outcomes to help in evidence based medical guidelines.

EHR adoption and Patient registries

A study by the Harvard school of public health in 2009 in a press release 2 found that though there is broad consensus that electronic health records (EHR) have the potential to improve the efficiency and effectiveness of healthcare providers , the adoption rate of EHR’s has been extremely slow. The main reason for this slow adoption is mainly economic, in hospitals and small practices. Dr.Ortiz, a family physician contends that a practice does not need an EHR to improve care but instead all practices can use existing patient registries to achieve the same improvement in health care delivered.

In his, article 3 termed “Who needs an EHR? Software you already have can help you make sure your patients get the care they need.” – He describes in detail how to use simple computer tools such as excel or Microsoft access to manage chronic diseases. The specific example in Dr.Ortiz’s article is a patient registry for type 2 diabetes. This approach will be a front load in terms of time invested in entering all the details into a spreadsheet. However, would this be a better ROI than an expensive EHR system? Training staff to data mine from a spread sheet would be a lot easier than training someone on a complex EHR system would it not? Should small practice physicians try this out before investing in EHR systems despite the federal incentive carrots that are dangling? I am just playing the devil’s advocate here. By presenting this article here, I would like to get the view of other informaticians. I honestly had never thought of this till I by chance came across this article - so what do others think?


  1. 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.
  2. 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
  3. 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
  4. HL7 Version 3 Standard: Patient Administration (also known as ADT - Admit, Discharge, and Transfer; Encounter Management; Administrative Registries). Retrieved from:


  1. Washington State Diabetes Connection, viewed at http://diabetes.doh.wa.gov/partners-1/cdems-rainshadow-technology-solutions
  2. 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/
  3. 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)