Patient-Led Research Collaborative
Patient-Led Research Collaborative is a non-profit founded in 2020 that operates the PLRC Registry and related programs to connect Long COVID patients with clinical trials, publish patient-generated research hypotheses, and advocate for improved patient care policies globally.
- Company typePrivate
- Founded-
- Headquarters—
- Headcount1–10
- GTM typeB2B and B2C
- OfferingServices
What Patient-Led Research Collaborative does
The Patient-Led Research Collaborative (PLRC) is an international non-profit research organization founded in 2020 that focuses on improving research into Long COVID and infection-associated chronic conditions. It is staffed by approximately 10 individuals who themselves live with these conditions and come from diverse professional backgrounds. The organization's stated mission is to advance the breadth, depth, and speed of global research and to advocate for policies that improve quality of life for patients worldwide.
PLRC's central offering is the PLRC Registry, a patient-designed digital platform hosted via mydatahelps.org that connects individuals with Long COVID and associated conditions to clinical trials and research studies. The organization surrounds this registry with a portfolio of complementary programs: the Hypothesis Journal (a peer publication of patient-generated research hypotheses, with Issue 1 released Spring 2023 and Issue 2 released Summer 2024), Patient Engagement Scorecards (a downloadable PDF assessment tool for measuring patient engagement in research), a Patient-Led Research Fund that provides grants to patient-led initiatives, a Clinical Trials information hub, and PLRC Advisory Services for researchers, clinicians, and organizations. Distribution occurs primarily through its website (patientresearchcovid19.com), email newsletter, earned media, and advocacy outreach.
As a non-profit, PLRC does not operate a traditional commercial revenue model. The organization solicits donations (a "Donate" call-to-action is prominent on the site), operates the Patient-Led Research Fund, and offers paid Advisory Services to researchers, clinicians, and organizations. The technology stack centers on a self-serve web platform with the registry powered through a third-party patient-data tool (mydatahelps.org), rather than proprietary enterprise software. Customer segments include patients with Long COVID (primary), Long COVID researchers, and clinicians, with the global audience reached through digital content and advocacy channels.
Patient-Led Research Collaborative firmographics
Firmographics- Name
- Patient-Led Research Collaborative
- Legal name
- Patient Led Research Collaborative
- Website
- https://patientledresearch.com
- Company type
- Private
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Patient-Led Research Collaborative is a non-profit founded in 2020 that operates the PLRC Registry and related programs to connect Long COVID patients with clinical trials, publish patient-generated research hypotheses, and advocate for improved patient care policies globally.
- Ownership category
- akta.pro rank
Patient-Led Research Collaborative industry classification
Industry- Product category
- Patient Advocacy and Research Services
- NAICS
- Software Publishers (513210)
- SIC
- Services-Prepackaged Software (7372), Services-Computer Programming, Data Processing, Etc. (7370)
- akta.pro primary industry
- Electronic Data Capture (EDC) Platforms (HLACAOAA)
Keywords
Patient-Led Research Collaborative business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Technology or R&D, Operations, Marketing or Sales
Distribution channels1 record
Marketing channels4 records
Patient-Led Research Collaborative product offering
Product offeringCore offering
PLRC is a non-profit patient-led research collaborative focused on Long COVID and infection-associated chronic conditions. It provides the PLRC Registry platform where patients share health data and surface research hypotheses, advisory services for researchers and clinicians, and the Patient-Led Research Fund to support related scientific studies. The organization also publishes resources such as the Hypothesis Journal and Patient Engagement Scorecards.
Product overview
Patient-Led Research Collaborative (PLRC) is a patient-centered research organization offering a portfolio of interconnected programs. The core offering is the PLRC Registry—a patient-designed platform connecting individuals with clinical trials and research studies. Supporting programs include the Hypothesis Journal (a patient-generated research publication), Patient Engagement Scorecards (assessment tools), the Patient-Led Research Fund (grant program), Clinical Trials information access, and Advisory Services. The organization focuses on improving research into Long COVID and infection-associated chronic conditions through patient-centered, equitable approaches.
Differentiator
Problem solved
Functional benefit
Products and services
- PLRC Registry Proprietary digital registry platform that allows patients with Long COVID and infection-associated chronic conditions to share health data, contribute symptom and experience information, surface research hypotheses, and connect with relevant clinical trials and research opportunities. Targeted at patients living with these conditions.
- PLRC Advisory Services Advisory offering for researchers, clinicians, and organizations working on Long COVID and infection-associated chronic illnesses, providing guidance on patient-engaged research design, methodology, and patient recruitment.
- Patient-Led Research Fund Grant program that provides funding to scientific studies focused on Long COVID and infection-associated chronic conditions, channeling resources to research aligned with the patient-led agenda.
Companies that use Patient-Led Research Collaborative
Customer profileSegments3 records
Ideal customer profiles2 records
Patient-Led Research Collaborative technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature1 record
Patient-Led Research Collaborative partnerships and signals
Strategic signalScale indicators1 record
Recent moves5 records
Expansion highlights4 records
Patient-Led Research Collaborative competitors and assessment
Company assessmentDirect peers
- PatientsLikeMe: Patient-led online platform where members share health data and connect with research studies across chronic conditions. Directly comparable to PLRC Registry's model of connecting patients with clinical trials and generating patient-centered research insights.
- Antidote: Clinical trial matching platform that uses structured data to connect patients with relevant trials. Comparable to PLRC Registry in the trial-recruitment use case, though Antidote operates commercially across many conditions.
- Long COVID Alliance: Coalition advancing Long COVID research, patient care, and policy. Directly comparable to PLRC's advocacy-driven approach and Long COVID focus, though operating as a coalition rather than a patient-led research collaborative.
- Body Politic: Foundational Long COVID patient-led support and advocacy community that helped catalyze the patient-driven Long COVID research movement. Directly comparable as a patient-led Long COVID organization focused on advocacy and research coordination.
Emerging players
- Genetic Alliance: Nonprofit focused on patient advocacy, genetic and rare disease research infrastructure, and registry development. Comparable to PLRC as a patient-driven research organization building engagement tools and resources.
- CURE ID: NIH/NCATS-led app and platform for crowdsourcing clinician-reported treatment outcomes and connecting patients to clinical trials. Comparable as a federally backed patient-to-research pipeline overlapping PLRC Registry's core function.
Broad incumbents
- Cystic Fibrosis Foundation: Established patient-driven foundation that funds a disease-specific research pipeline and registry. Comparable to PLRC as the canonical patient-led research funding model, though operating at vastly greater scale with a different disease focus.
- All of Us Research Program: NIH-led million-person precision medicine registry that recruits diverse participants and shares data with researchers. Comparable as a large-scale patient registry feeding clinical research, though federally funded and condition-agnostic rather than patient-led and disease-specific.
Market position
Strengths3 records
Weaknesses3 records
Competitive moat4 records
Key risks4 records
Key highlights4 records
Customer concentration
Patient-Led Research Collaborative social profiles
Digital presencePatient-Led Research Collaborative financial estimates
Financial estimateRevenue estimate
Valuation estimate
Patient-Led Research Collaborative leadership team
Management profileNumber of profiles
Patient-Led Research Collaborative funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Patient-Led Research Collaborative M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Patient-Led Research Collaborative
What does Patient-Led Research Collaborative do?
PLRC is a non-profit patient-led research collaborative focused on Long COVID and infection-associated chronic conditions. It provides the PLRC Registry platform where patients share health data and surface research hypotheses, advisory services for researchers and clinicians, and the Patient-Led Research Fund to support related scientific studies. The organization also publishes resources such as the Hypothesis Journal and Patient Engagement Scorecards.
Is Patient-Led Research Collaborative a public or private company?
Patient-Led Research Collaborative is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Patient-Led Research Collaborative founded?
Patient-Led Research Collaborative was founded in -1. It employs 1 to 10 people.
Who are Patient-Led Research Collaborative's main competitors?
Direct peers on record are PatientsLikeMe, Antidote, Long COVID Alliance and Body Politic. Emerging players are Genetic Alliance and CURE ID. Broad incumbents are Cystic Fibrosis Foundation and All of Us Research Program.
Does Patient-Led Research Collaborative have an API?
No public API is recorded for Patient-Led Research Collaborative.
What industry is Patient-Led Research Collaborative in?
Patient-Led Research Collaborative's product category is Patient Advocacy and Research Services. Its primary akta.pro industry code is HLACAOAA, Electronic Data Capture (EDC) Platforms. Its NAICS code is 513210 and its SIC code is 7372.