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A Registry is as a database containing uniform, clinical information about people. Registries 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 as well as for clinical purposes including 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.

There are also Clinical Registries, which are used to assist with direct patient care. Below are several various examples of the utility of clinical registries.

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 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 [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.

A Genetic Testing Registry was developed by the NIH 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.

Amended by: (Cindi Feldman)

Clinical Registries

A Clinical Registry is, at it's simplest form, "a collection of information about individuals" that is typically organized by inclusion criteria regarding specific disease conditions or routine preventative healthcare measures.[1]

For example, in a disease management registry, a 50-year-old diabetic patient may be included in a registry database of diabetic patients as well as an adult wellness registry of preventative healthcare recommendations. Within that diabetic registry may be measures such as yearly eye exam, yearly foot exam, pneumococcal-23 vaccination, HbA1c value, annual office visit, hepatitis B immunity/vaccination, and analysis of urine for microalbuminuria.

Given the changing model of healthcare from fee-for-service to value-based care, there is increasing emphasis on quality care at a reasonable cost. Population health tools such as registries play an important role in this changing landscape by allowing providers to monitor the health of their patients from a practice level as opposed to solely at the independent patient level, without significant effort in manual reporting.[2]

There are many uses for registries in a primary care office, where a provider's main goal is to prevent disease and the sequelae of disease. The compliance for various metrics can be viewed at a population level by organizations to determine physician reimbursement based on quality of care. This also allows for comparison between providers within the same office and even the same organization. Providers and office managers can use the information to easily identify patients due for routine health screenings and coordinate outreach so that patients return for visits to discuss evidence based guidelines. Patients that may be out of care for a specific time range, such as those due for annual office visits, can be identified and called in. A list of patients with uncontrolled disease, such as those with elevated blood pressures or HbA1c, can be aggregated for consideration of additional support to help the patients reach goal.

Registries are also a great tool for medical residents, encouraging ownership in the overall care of their patients by highlighting metrics for their specific patient panels.

Obtaining Registry Data

Given the changing model of healthcare from fee-for-service to value-based care, there is increasing emphasis on quality care at a reasonable cost. Population health tools such as registries play an important role in this changing landscape by allowing providers to monitor the health of their patients from a practice level as opposed to solely at the independent patient level, without significant effort in manual reporting.[2]

In 2009, the Health Information Technology Economic and Clinical Health (HITECH) Act established the Meaningful Use Incentive Program, a program established by the Centers for Medicare and Medicaid Services (CMS) to encourage use of certified electronic health records.Cite error: Invalid <ref> tag; invalid names, e.g. too many There are several important steps in the process bidirectional interoperability. Under the HITECH Act, more than $500 million has been invested to develop electronic health information exchanges (HIEs) in each state.<name="Dombkowski 2012> These HIEs contain the needed security to encourage and facilitate transmission of data between providers. The structure of the data exchanged is also important. Just like obtaining medical records from a patient that are written in a foreign language, the information is useless unless you can translate and read it. National standards have been established that facilitate message transmission, such as FHIR.

Submitted by (Jessica Roeske)


  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:
  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:
  4. HL7 Version 3 Standard: Patient Administration (also known as ADT - Admit, Discharge, and Transfer; Encounter Management; Administrative Registries). Retrieved from:
  5. Washington State Diabetes Connection, viewed at
  6. Genomics Law Report, “Evaluating the NIH’s New Genetic Testing Registry” posted by Dan Vorhaus, March 18, 2010. Accessed at:
  7. 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

Above references of work amended by: (Cindy Feldman)

Clinical Registries References

  1. Rastegar-Mojarad M, Sohn S, Wang L, Shen F, Bleeker TC, Cliby WA, et al. Need of informatics in designing interoperable clinical registries. Int J Med Inform. 2017;108:78–84.
  2. 2.0 2.1 Dombkowski KJ, Clark SJ. Redefining Meaningful Use: achieving interoperability with immunization registries. Am J Prev Med. 2012;42(4):e33-e35.

Submitted by (Jessica Roeske)