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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), (Jessica Roeske)

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 (percentage representing average glycemic control over 3 months), 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.

Submitted by: (Jessica Roeske)

Obtaining and Capturing 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.[2] The Meaningful Use Incentive Program had 3 stages, but has now evolved as part of the Merit Based Incentive Payment System (MIPS) to become the Medicare EHR Incentive Program. However, Stage 1 of meaningful use included a criterion requiring submission of electronic data to a state or regional immunization system. The requirement noted that information had to be sent unidirectionally, indicating that sending data back to the EHR was not required to achieve credit.[2]

The one way transfer of data to another system, such as in the case of immunizations, is a way to track populations and the rate of protection from herd immunity. However, connecting this information to providers is beneficial to patient care. Utilizing a system outside of the EHR is time consuming and requires searching by individual. Data may be incomplete, resulting in administration of unneeded vaccine doses or expenditure of extra resources in patient outreach.[2] Registries can help fill this gap, consolidating and organizing data from outside sources, including payer data and individual organizations, and integrating it into the EHR and the patient's chart.

To capture the data needed for registries, the information is most easily obtained from from structured, specific data elements. The aggregated data can then be used to assist in patient treatment, public health outreach, payment, and quality improvement.[3] 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.[2] 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.[3]

The American Medical Association formed the National Quality Registry Network (NQRN) in 2011, as a voluntary group of registry "stewards and stakeholders."[4] This has since evolved in 2016 as a part of the Physician Consortium for Performance Improvement. NQRN consists of a network of organizations that operate registries and are interested in advancing the use as well as the development of this tool. The organizations help in planning and operating registries, may provide infrastructure including data standards and platforms, participate in research to assess improvement in patient outcomes, and promote the use of registries through advocacy.[4]

Internally, there are methods to capture data from the EHR itself. While some registries allow for manual data entry if interoperability does not exist, this is prone to human error and can be time consuming. One way to automate collection of data is to map discrete data sources to the registry database. For example, if collecting data regarding the most recent HbA1c value for a diabetic patient, you would first need to know where this value lies in the EHR. It may have a DTA to a lab draw and also be stored in a separate location if the test is done in office as a point of care fingerstick. If you map the HbA1c value in registries only to the HbA1c obtained from a lab draw, you miss data on patients that have the test done in the office. As such, with missing data the metric is rendered unreliable. It is important for registry administrators to be a part of data governance and change committees. For example, consider a mammogram stored in a discrete location in Folder A. The radiology department then adopts a new method for mammography and creates another report type, storing this in Folder B so that they can track the number of tests done with the advanced method. By storing this report in a different location, if the mammogram in Folder B is not mapped to registries, these will not register in the database and patients that are up to date with screenings will look like they are overdue.

It can be useful to involve clinicians in the design and mapping process, at least initially. A key group of knowledgeable users can identify the locations an end user would go to find results. In turn, all possible data locations within an EHR can be identified. If structured elements do not exist, these providers can be a helpful resource in designing a structured form or process that will facilitate structured data collection.

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 2.2 2.3 2.4 2.5 Dombkowski KJ, Clark SJ. Redefining Meaningful Use: achieving interoperability with immunization registries. Am J Prev Med. 2012;42(4):e33-e35.
  3. 3.0 3.1 Blumenthal S. Improving interoperability between registries and EHRs. AMIA Jt Summits Transl Sci Proc. 2018; 2017: 20–25.
  4. 4.0 4.1 Physician Consortium for Performance Improvement. Programs-PCPI. [cited 20 Oct 2018]. Available from:

Submitted by (Jessica Roeske)