Registry Logic: Definitions
July 23, 2024
Patient registries provide valuable data that can help inform decision making in healthcare, but not all healthcare researchers and organizations define or use the term “patient registry” in the same way.1 Here are some definitions and concepts to help keep things straight.
WHAT’S A PATIENT REGISTRY, ANYWAY?
The term “patient registry” can refer to anything from a doctor with an Excel spreadsheet of patient info, to a sophisticated, cloud-based, international program. That said, all definitions agree that registries collect information about people with a particular medical condition.1
From Canada’s Drug Agency (CDA-AMC): Disease registries are centralized repositories, which collect and retain standardized information about a group of patients who share a condition.2
From The Canadian PKU Registry: A database that stores information about a group of patients who have the same disease.3
WHAT ARE THE MAIN CATEGORIES OF REGISTRY?
Disease or condition registries. These registries include individuals with a specific disease or disease-related characteristic, regardless of whether they have received a particular treatment or health service. For example, the Canadian Cancer Registry and other similar registries track incidence, treatments, and outcomes for patients with various cancers.4 Registries for cancer and some other chronic diseases can be classified as either5:
- Hospital-based, either single-centre or multi-centre; these tend to focus on administrative information, clinical research, and quality improvement.
- Population-based; these tend to look at screening and diagnosis, incidence trends, and patterns of care and outcomes.
Patient registries. Typically run through a single institution or a network of centres, these registries usually have a more limited scope than a wider disease surveillance registry and are often designed with a focus on specific clinical questions. The data may come from patients directly.6
Product-based registries. These registries collect data from patients using a specific drug, with the goal of providing a more comprehensive picture of the product’s effectiveness, safety, and use outside of formal clinical trials. These registries can draw on many different sources of data, including electronic medical records (EMR), HCP-submitted information, and patient-reported outcomes.6
Patient support programs (PSPs), a uniquely Canadian type of product-based registry, collect a wealth of data on patients taking a particular specialty medication. A big part of their value lies in their ability to capture longitudinal data that cover a large proportion of patients receiving a given drug.7
Health services registries. This type of registry records patients’ use of specific healthcare services, which may include things like office visits, hospitalizations, procedures, and full episodes of care.8
Clinical trial registries. These registries collect information across clinical trials in a given area, to look at comparative effectiveness between treatments but also to dig into potential sources of bias such as selective outcome reporting.9
Genetic registries and biomarker registries. Genetic registries collect information on disease-causing mutations and can play a key role in linking laboratory science to clinical practice. For example, the Rare Diseases: Models and Mechanisms Network, a Canadian initiative, helps clinicians understand the role of gene mutations in rare disease by creating opportunities for them to collaborate with researchers working on those genes in model organisms like flies and mice.10 Registries of diagnostic and prognostic biomarkers, such as the Interstitial Lung Disease biomarker registry, can also help us gain a better understanding of patient profiling and treatment expectations.11
References
Workman TA. Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks. https://www.ncbi.nlm.nih.gov/books/NBK164514/
Overview of rare disease-based registries. CDA-AMC [formerly CADTH] website. https://www.cadth.ca/drugs-rare-diseases-rare-disease-based-registries
About the Canadian PKU Registry. INFORM RARE. https://www.youtube.com/watch?v=vSQF8dfuyY8&t=117s
Pisa F et al. Real world data for rare diseases research: The beginner’s guide to registries, Expert Opinion on Orphan Drugs 2023;11:9.
Canadian Cancer Registry (CCR): Detailed information for 2021. Statistics Canada. https://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3207.
Cancer Registration & Surveillance Models: Types of Registries. NCI SEER Training Modules. https://training.seer.cancer.gov/registration/types/
Wills A et al. Data collection within patient support programs in Canada and implications for real-world evidence generation: the authors' perspective. J Pharm Pharm Sci 2023;26:11877.
Registries for evaluating patient outcomes: A user’s guide. (n.d.). https://www.adventhealthresearchinstitute.com/sites/default/files/2021-07/Registries for Evaluating Patient Outcomes A User’s Guide_0_1_1.pdf
Norris SL et al. Selective Outcome Reporting as a Source of Bias in Reviews of Comparative Effectiveness. https://www.ncbi.nlm.nih.gov/books/NBK100621/
Network brings scientists together to increase Canada’s understanding of rare diseases. CIHR. December 4, 2023. https://cihr-irsc.gc.ca/e/53747.html
ILD Biomarker registry, Canada. CTRNet Biobank Registration Program. https://biobanking.org/canreg/view/563