The rise of patient registries.

Equally important as the need to increase clinical trial awareness is the need to connect patients with clinical trials relevant to them. Enter: patient registries. Registries provide a way for patients to become part of a community of people just like them. They can contribute their data and experiences to help shape and define a patient population. And by joining, patients raise their hand not just to identify themselves but also to indicate a desire to take action and remain informed about their condition.

Patient registries may be established with varied objectives and missions, as explored by FasterCures in its report Expanding the Science of Patient Input: Building Smarter Patient Registries. However, most registries typically share:

  • A dedicated online community centered on a specific medical condition
  • Participants who have self-identified as patients living with the condition
  • A desire to advance science related to the condition, whether by sharing patient data that can be studied as an aggregate or by connecting patients with clinical trials
  • A communication platform for informing registrants of news and updates related to their condition or for reaching out about a specific clinical trial

While patient registries exist across a broad spectrum of therapeutic areas, those focused on rare diseases seem to be emerging at a greater rate. In rare disease, there may be fewer readily available treatment options, which compels patients to seek alternative methods for connecting with potential medical advances. For patients with these conditions, registries represent one of the few ways they can take a tangible action to defy their condition. As such, it can be an empowering step in their care.

Sixty-eight percent reported that the registry helped recruit patients to participate in research.

Source: Expanding the Science of Patient Input: Building Smarter Patient Registries, FasterCures

What forms do these patient registries take? Some are created as a part of larger organizations or patient communities, while others are separate groups with their own identities.

Patient registries led by organizations or foundations.

These registries carry with them a halo of trust because they are typically arms of established patient-centered organizations. The Autoimmune Research Network (ARNet), for example, was announced earlier this year as a collaborative effort by a coalition of several patient groups. ARNet is a patient registry that supports individuals diagnosed with one of more than 100 autoimmune diseases.

Patient registries led by industry.

Pharmaceutical and biotech companies have also begun launching their own patient registries. These registries typically support the organization’s concentration on research in a certain therapeutic area or for a specific indication. Managing the registry directly provides the company with access to involved patients and their feedback at different stages of clinical development – and, of course, to announce the launch of any clinical trials directly.

Patient registries focused on clinical trial matching (i.e., not specific to indication).

This scenario may fit the definition of “registry” most loosely. It focuses on building clinical trial awareness and collecting patient information regardless of patients’ diagnosed conditions. Patients register to indicate their interest in connecting to clinical trials, and the registry reaches out to connect them with trials related to their conditions as they become available. Matching registered patients with clinical trials is the primary purpose.

Patient registries can be a core resource for clinical research in our data-driven and digitally connected world. At Praxis, we seek to integrate patient registries into our outreach strategy to ensure those patients who have raised their hand get the opportunities for participation they are seeking. Contact us to learn how patient registries might fit into recruitment planning for your next study.

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