By Julia Daye

The last decade has seen a boom in patient registries—databases that collect voluntary information from people who share a medical condition or type of pain. In 2017, there were 886 registries listed on clinicaltrials.gov. By 2024, that number had ballooned to 2,068.

Registries have become powerful forces in research. Individuals’ willingness to share their experiences with researchers drives significant progress in health care, experts say.

“Hundreds of patients are sitting behind every drug you take,” says Aaron Abend, executive director of the Autoimmune Registry, which has an enrollment of 6,000.

He started the registry in 2016, following his mother’s diagnosis with Sjögren’s syndrome. The first of its kind for individuals with autoimmune diseases, it sought to capture demographics, incidence, and progression over time, similarly to the established function of the National Program of Cancer Registries. Covering more than 100 autoimmune diseases, the registry disseminates data about disease progression, comorbidities, and treatments.

Abend also serves on the board of the All Of Us research program, a National Institutes of Health (NIH) initiative incorporating a registry with hundreds of thousands of participants. Its goal is to enroll 1 million or more Americans from diverse backgrounds, gathering extensive data to accelerate clinical research and precision medicine.

The power of registries lies in their focus on patient voices, says Shilpa Venkatachalam, PhD, co-principal investigator at PatientSpot, a chronic disease registry with more than 50,000 participants. Launched in 2014 as ArthritisPower, the initiative, offered through the Global Healthy Living Foundation’s CreakyJoints, was first created as a platform for individuals with rheumatic and musculoskeletal conditions. It received initial support from the Patient-Centered Outcomes Research Institute (PCORI) and eventually evolved to cover all chronic disease.

After navigating the strange labyrinth of chronic illness years ago, Venkatachalam knew she wanted to help drive systemic change.

“Community members dedicate time and commitment to share their lived experience with researchers and clinicians so that we can advance our understanding of how these diseases affect everyday life,” she explains.

Bridging lived experience and scientific understanding

Registries are treasure troves of real-world evidence on drug efficacy, treatment patterns, adverse events, and other data points. These databases bring the voices of lived experience directly to researchers and drug developers. What are patients willing to tolerate when it comes to medication? What is a deal breaker? Their perspectives help guide trial design and steer the direction of new treatments.

For clinicians and researchers, registries offer insights into the invisible aspects of an illness—fatigue, brain fog, pain manifestation, functional interference—that can’t be pinpointed using blood work or X-rays. And for patients, the databases illustrate a disease’s long-term arc, shedding light on what they can expect over time.

Registries are also a huge help in recruiting for clinical trials, which can require exceptional levels of selflessness from participants. In some cases, enrolling in a trial might mean stopping a medication that’s working somewhat well to test a new drug that may or may not reduce their pain—all for the sake of potential future progress for the community sharing their illness.

“One of the challenges we found with autoimmune disease is that these are sick people. They’re in pain,” says Abend. “And if they have a good day, the last thing they want to do is go into a clinical trial or an investigator’s office and get prodded and poked.”

Many people who join registries are already curious about engaging in research, creating a ready pool of interested participants when it’s time to recruit. The goal of the Autoimmune Registry is to facilitate a better research experience for its members through a greater understanding of their lives, Abend says.

Driving discovery, shaping care

A number of registries can be found online. For anyone with the condition or type of pain a registry addresses, getting started is often as easy as providing an email address and answering some basic questions.

Generally, members can share as much or as little information as they want, often through surveys or questionnaires. Some opt to provide their health records. Their data is kept private, and they have the option to withdraw at any time.

Registries vary widely in their structure, including in their connection to research. PatientSpot is a research registry, with quality measures that ensure its patient-provided data meets publication standards. “We have more than 90 abstracts at conferences, and more than 60 publications,” Venkatachalam says.

PatientSpot also does a lot of trial recruitment, while supporting members with regular needs assessments and health tracking through a phone app.

In contrast, the information collected by the Autoimmune Registry is not directly published in research. But scientists can examine its data to identify patterns or questions that inform future studies. The registry connects researchers to potential trial participants, notifying members of relevant study opportunities. It also offers firsthand member accounts of diagnostic journeys and stipends for advocacy conferences.

Patient-powered registries have a clear objective: everyday individuals and scientists working together for greater understanding and research progress.

“Research is only going to be relevant when it works for the patient,” Venkatachalam says. “So it is the patient community who advises us on what questions need to be answered, how, and for whom. They are equal partners alongside researchers and clinicians.”

EXAMPLES OF PATIENT REGISTRIES

There are thousands of patient-powered registries related to pain and individual conditions. These are just a few.

—All of Us Research Program

—Autoimmune Registry

—Autoimmune Research Network (ARNet)

—Clusterbusters Patient Registry

—DICE EDS and HSD Global Registry

—Facial Pain Registry

—HEADS Registry

—IAMRARE

—iConquerMS

—National Program of Cancer Registries

—PatientSpot

—POTS Research Registry

—PRECISION Pain Research Registry

—RAY: Research Accelerated by You

—T1D Exchange Registry

—Yale Rheumatology Program Patient Registry and Bio-Repository