Research

What Is a Patient Registry?

There Are Different Types of Medical Registries

A medical registry is a type of database. Registries can collect data for scientific, clinical or policy purposes. Each registry has set criteria to find out which patients to include. These criteria are often based on proof of a disease, or if a patient has had a specific treatment or procedure.

  • A device registry stores facts about certain clinical or medical devices and tracks the device's performance.
     
  • A disease registry tracks the clinical care and results of a group of people diagnosed with a specific disease. Clinicians often use disease registries to support care plans for their patients.
     
  • Some registries (such as clinical trials registries) collect basic health information from people so researchers can contact them about joining future clinical trials or studies.
    Some clinical data registries ask health care professionals to send data about their patients. Information from some types of registries is used to compare quality and cost of care among doctors and hospitals.
     

Patient Registries

A patient registry is an organized way to collect standardized data about a group of people who are affected by a certain disease or medical condition. Patient registries can collect data for scientific, clinical or policy purposes. Patient registries allow clinicians and researchers to learn from the real world experience of patients through their data. Patient registry data can help researchers, clinicians, patients and policymakers know what works best (and for whom) in the real world.

Having uniform patient data allows researchers to combine input from hundreds or thousands of people. This helps researchers begin to see disease patterns that might not otherwise be obvious.

Patient-Powered Registries

A patient-powered registry is a patient registry in which people provide the data. People and families also help develop and sometimes even direct the research agenda for the data. Often, these registries are designed so that participants are in control of when, how and with whom their data is shared.

The Asthma and Allergy Foundation (AAFA) Food Allergy Patient & Family Registry (the Registry) is a program to collect, manage and analyze data from and about people with food allergies. AAFA supports and manages the Registry. It is the first and only medical registry focused on the real-world experiences of people who have food allergies. The Registry shapes food allergy research by focusing on the questions and solving the problems that people say are most important. Adults with food allergies and parents or guardians of children who have food allergies give the data for AAFA's Registry.

Patient-provided data will advance research and give a better sense of what is important to those with food allergies. It will also provide vital information that researchers need to improve food allergy diagnoses and treatment. The Registry will help us understand how living with food allergy affects people. The ultimate goal is to help find a cure for food allergies.

How Patient Registry Data Are Used

Patient registry information is used in a variety of ways:

  • Find out what is most important to patients and their families
  • Identify patient values, preferences and priorities
  • Learn more about the disease and how it impacts people
  • Study behavior patterns of people who have the disease
  • Track and improve the quality of health care for patients who have the disease
  • Understand quality of life of people and families with the disease
  • Answer research questions from the patient's perspectives about the disease
  • Inform advocacy and public policy activities
  • Help develop new treatments for the disease from the patient's perspectives
  • Study best practices in care or treatment for the disease
  • Sign up patients for research related to the disease

Registry Sponsors

A government agency, nonprofit organization, health care facility, research organization or private company can sponsor registries. Before joining a registry, first learn who is paying for it. (https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries). This is because depending on how the registry is set up, the data in the registry usually belongs to the registry sponsor. In the case of a patient-powered registry, such as AAFA's, participants control the data .

Selected Resources

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.)

National Institutes of Health. List of Registrieshttps://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries

Workman TA. Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks [Internet]. Agency for Healthcare Research and Quality. 2013 Sept. Defining Patient Registries and Research Networks. Available from: http://www.ncbi.nlm.nih.gov/books/NBK164514/