RWE Methods · Registries
Patient Registries
A patient registry collects uniform data on a defined population over time, one of the most established sources of real-world evidence.
Registries, and how they are evolving into regulatory-grade evidence, are on the agenda at RWE Connect 2026 in Boston.
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The landscape
Types of Patient Registry
Registries are defined by what brings their patients together, a disease, a treatment, a device or a setting.
The distinction
Registry vs Clinical Trial
Registries and trials answer different questions. One tests a therapy under controlled conditions; the other watches how care unfolds in the real world.
Clinical Trial
- Controlled and randomized
- Narrow, strict eligibility
- Shorter, fixed follow-up
- Tests efficacy under ideal conditions
Patient Registry
- Observational, real-world
- Broad, representative population
- Long-term follow-up
- Tracks effectiveness and safety in practice
Registries are a core source for observational studies and for building external control arms.
Why they matter
What Patient Registries Are Used For
A well-run registry answers questions no single trial can, across the whole life of a therapy.
How it works
How a Patient Registry Is Built
A registry is a long-term system, designed with the same discipline as the questions it must answer.
Getting it right
What Makes a Registry Credible
A registry is only as useful as its data is trustworthy. These are the marks of a high-quality registry.
The direction of travel
Where Patient Registries Are Heading in 2026
Registries are becoming faster, more connected and more decision-grade. These are the shifts on the agenda at RWE Connect 2026.
Who is in the room
Who Attends RWE Connect 2026
A senior, focused audience of the people who design, run and analyze registries.
Seniority is confirmed: 150+ attendees, around 60% at Director or VP level and above. The functional mix shown is indicative; confirmed registration splits are shared with sponsors from the live delegate list.
Explore
Explore Related Methods
Patient registries sit within a wider RWE methods toolkit.
Sponsor RWE Connect 2026
Meet the Registry and Evidence Buyers in Boston
The teams that design and run registries gather at RWE Connect 2026: 150+ attendees, around 60% at Director or VP level and above.
RWE Connect 2026
Get the RWE Study Methods Primer
A plain-English guide to the core real-world evidence methods, including patient registries. See the methods, then meet the people applying them in Boston.
- The types and uses of registries
- What makes a registry credible
- Where registries are heading in 2026
Free. Instant download. No obligation.
Patient Registries: Common Questions
What is a patient registry?
A patient registry is an organized system that collects uniform data on a defined population, by disease, exposure or product, over time to support clinical, safety, regulatory or health-policy purposes.
What are the main types of patient registry?
Disease registries, product and exposure registries, rare disease registries, pregnancy registries, device registries and health-services registries.
What is the difference between a patient registry and a clinical trial?
A clinical trial is controlled and randomized with narrow eligibility and short follow-up. A registry is observational, follows a broad real-world population over the long term, and tracks effectiveness and safety in routine care.
How is a patient registry different from an EHR database?
An EHR database captures routine care as a by-product of treatment. A registry is purpose-built, with a defined population, standardized data elements and follow-up designed for a specific question.
What are patient registries used for?
Understanding natural history, safety surveillance, real-world effectiveness, HEOR and value evidence, quality improvement, and meeting regulatory commitments.
How is a patient registry built?
By defining the purpose and population, designing the data model, recruiting sites and patients, collecting and standardizing data, ensuring quality and governance, and analyzing and reporting.
What is a rare disease registry?
A registry focused on a rare condition, often spanning many centers or countries to gather enough patients to study natural history, treatment and outcomes.
Are patient registries used in regulatory and HTA decisions?
Yes. High-quality registries support safety commitments, real-world effectiveness evidence and, increasingly, external comparators for regulatory and HTA review.
What makes a patient registry high quality?
Clear objectives, representative enrollment, standardized data elements, complete follow-up, strong data quality and governance, and transparent methods.
What are common data elements?
Standardized, pre-defined variables collected the same way across sites, so registry data is consistent and can be pooled or compared.
What is RWE Connect 2026?
RWE Connect 2026 is a two-day real-world evidence summit in Boston bringing together the RWE, HEOR and methods leaders who generate and apply real-world evidence, with 40+ speakers and 150+ attendees.
When and where is RWE Connect 2026?
14 to 15 October 2026 at the Hampton Inn by Hilton, Boston Seaport District, Boston, MA.
