The PLRC Registry provides a patient‑run platform that matches individuals living with Long COVID and related chronic conditions to relevant clinical trials and research studies. Built by patients for patients, the registry streamlines enrollment and data sharing to accelerate research while ensuring the process remains accessible and patient‑centered.
Funding
Funding not disclosed
Founders
Product
Problem
Patients with Long COVID and related chronic conditions often struggle to find and enroll in relevant clinical trials, leading to fragmented data collection and slower progress in understanding and treating these illnesses.
Solution
The PLRC Registry provides a patient‑designed, web‑based platform that matches individuals living with Long COVID and infection‑associated conditions to appropriate clinical trials and research studies worldwide. The registry streamlines enrollment by allowing users to create profiles, share health data securely, and receive notifications about eligible studies. Aggregated, patient‑consented data are made available to researchers to accelerate study recruitment, improve data diversity, and support evidence‑based policy advocacy. By centering the patient experience, the platform aims to make research more efficient, equitable, and focused on outcomes that matter to the Long COVID community.
Target Audience
Primary users are individuals living with Long COVID or related chronic post‑infection conditions seeking trial participation, and researchers or sponsors conducting studies on these conditions.
Features
- Patient‑controlled profile creation with health information relevant to Long COVID and related conditions
- Automated matching algorithm that suggests current clinical trials and research studies based on user data and eligibility criteria
- Secure data sharing framework that enables participants to consent to share de‑identified information with researchers
- Dashboard for researchers to access aggregated, consented participant data to improve recruitment and study design
- Integrated communication tools that notify users of new study opportunities and allow direct contact with study coordinators
- Open‑source, patient‑led governance model ensuring the platform remains focused on community needs and transparency