Research Participation Guide

Empowering patients to contribute to invisible illness research. Your participation drives the discoveries that will transform diagnosis, treatment, and understanding for millions of people living with conditions that are too often dismissed.

ClinicalTrials.govNIH-fundedPatient-CenteredIRB-Approved

35+ Patient Registries

Across invisible illness conditions

150+ Active Studies

Clinical trials and observational research

Citizen Science Growing

Patient-powered data collection

Your Data = Progress

Every participant accelerates discovery

Why Participate in Research

Research participation is one of the most impactful actions a patient can take. Here is why your involvement matters.

Advance Treatments

Every participant in a clinical trial or registry brings researchers closer to understanding disease mechanisms, validating biomarkers, and developing targeted therapies. The treatments that exist today were made possible by patients who participated in studies years ago.

Shape Future Care

Patient-reported outcomes directly influence clinical guidelines, insurance coverage decisions, and diagnostic criteria. When researchers hear from thousands of patients, they can identify patterns that individual clinicians miss and shape policies that affect millions.

Access Experimental Therapies

Clinical trial participants often gain access to cutting-edge treatments years before FDA approval. For conditions with limited treatment options, trials may offer the best path to relief. Many breakthrough therapies started as experimental protocols available only to study participants.

Contribute to Knowledge

Invisible illnesses are among the most underfunded and underresearched conditions in medicine. Every data point you contribute -- whether a survey response, blood sample, or symptom diary -- adds to the collective understanding that will benefit future generations of patients.

Types of Studies

Understanding the different types of research studies helps you choose the participation method that best fits your situation, comfort level, and health status.

Observational Studies

Observational studies collect data without intervening in participants' care. Researchers observe and record health outcomes, symptoms, and behaviors over time to identify patterns and risk factors.

Clinical Trials (Phase I-IV)

Clinical trials test new treatments, diagnostics, and interventions in controlled settings. They are the gold standard for advancing medical knowledge and the pathway through which every FDA-approved therapy reaches patients.

Biobank / Sample Donation

Biobanks store biological samples -- blood, tissue, saliva, cerebrospinal fluid -- for current and future research. Your donation today may enable breakthroughs that are impossible with current technology.

Patient Registries

Patient registries collect standardized health data from large groups of people with similar conditions. They help researchers identify patterns, track outcomes over time, and design better clinical trials.

Surveys & Questionnaires

Online surveys and patient-reported outcome (PRO) measures allow you to contribute to research from home. Longitudinal studies that track symptoms over months or years are especially valuable for invisible illness research.

How to Find Studies

Multiple pathways exist for finding research studies that match your condition, location, and preferences. Start with these key resources.

ClinicalTrials.gov

The U.S. National Library of Medicine maintains the world's largest database of clinical trials. Search by condition, location, study phase, and enrollment status. Over 450,000 studies across 220+ countries are registered.

NIH RePORTER

NIH RePORTER tracks all NIH-funded research projects. Use it to find which institutions are studying your condition, how much funding is allocated, and which investigators are leading the work. This tool helps you identify research centers near you.

University Research Centers

Major academic medical centers often maintain their own study registries and actively recruit patients. Many have dedicated research participation offices that match volunteers with appropriate studies.

Patient Advocacy Organization Research Arms

Patient advocacy organizations increasingly fund, design, and recruit for their own research studies. These patient-centered studies often address the questions that matter most to patients but are overlooked by traditional research funding.

Study Finder Checklist

Save your preferences to help you find matching studies. Your selections are stored locally on your device and are never sent to any server.

Your Primary Condition

Your Location (city or state)

Preferred Study Type

Patient Rights in Research

Federal regulations protect every research participant. Understanding your rights empowers you to participate confidently and safely.

Informed Consent

Before participating, you must receive a clear explanation of the study's purpose, procedures, risks, benefits, alternatives, and duration. Consent is an ongoing process -- researchers must inform you of any new risks discovered during the study. You should never feel pressured to sign, and you can take as much time as you need to decide.

Right to Withdraw

You can leave any research study at any time for any reason without penalty, loss of benefits, or changes to your medical care. Withdrawal is your unconditional right under the Common Rule (45 CFR 46). You may also request that your data and samples be destroyed upon withdrawal, subject to the terms specified in your consent form.

HIPAA Protections

Your health information is protected by HIPAA (Health Insurance Portability and Accountability Act) and the Common Rule. Researchers must de-identify or encrypt your data, limit access to authorized personnel, and maintain audit trails. You have the right to know who will access your data and how it will be stored, shared, and eventually destroyed.

IRB Oversight

Every federally funded research study must be reviewed and approved by an Institutional Review Board (IRB) -- an independent committee that ensures the study protects participants' safety, rights, and welfare. The IRB reviews study design, informed consent documents, data security plans, and risk-benefit ratios before any enrollment begins.

Understanding Clinical Trial Phases

Clinical trials progress through four phases, each with a specific purpose and participant population. Understanding these phases helps you evaluate which trials are appropriate for your situation.

Safety

Phase ISeveral months

Tests a new drug or treatment in a small group of 20-100 healthy volunteers or patients for the first time. The primary goal is to evaluate safety, determine a safe dosage range, and identify side effects. About 70% of drugs move to Phase II.

Efficacy

Phase IISeveral months to 2 years

Tests the treatment in a larger group of 100-300 patients who have the target condition. The primary goal is to determine whether the treatment works (efficacy) while continuing to monitor safety. Randomized, placebo-controlled designs are common. About 33% of drugs move to Phase III.

Comparison

Phase III1-4 years

Tests the treatment in 1,000-3,000+ patients, comparing it against the current standard of care or placebo. These large-scale trials generate the data required for FDA approval. Conducted at multiple sites, often across countries. About 25-30% of drugs are approved after Phase III.

Post-Market Surveillance

Phase IVOngoing

Conducted after FDA approval to monitor long-term safety and effectiveness in the general population. Detects rare side effects and drug interactions that smaller trials could not identify. Patient registries and real-world evidence studies contribute critical long-term data at this stage.

Why Patient Participation Accelerates Discovery

Insufficient enrollment is the single biggest reason clinical trials fail. Over 80% of clinical trials experience delays due to enrollment shortfalls, and 30% of Phase III trials fail because they cannot recruit enough participants. Your participation does not just help -- it is essential. Every patient who enrolls brings the entire field closer to answers.

Invisible Illness Research Funding by Year

Total estimated NIH research funding (in millions USD) across Lyme disease, ME/CFS, Long COVID, fibromyalgia, and POTS. Long COVID funding surged in 2021-2022 through the RECOVER initiative, while other conditions have seen steady but slower growth.

Lyme Disease

ME/CFS

Long COVID

Fibromyalgia

POTS

Active Registries & Biobanks

11 of 11

Patient registries and biobanks currently accepting participants. Filter by condition to find registries relevant to you.

RECOVER

Long COVIDOpen

National Institutes of Health (NIH)15,000+ participantsLongitudinal Cohort

Visit recovercovid.org or ask your provider about enrollment at 200+ sites nationwide.

Learn More

UK ME/CFS Biobank

ME/CFSRecruiting

University College London (UCL)3,500+ participantsBiobank

Contact the CureME team at UCL. Blood and tissue samples collected at clinic appointments.

Lyme Disease Biobank

Lyme DiseaseOpen

Bay Area Lyme Foundation1,200+ participantsBiobank

Enroll at lymediseasebiobank.org. Blood and CSF samples collected at participating clinics.

Learn More

MyLymeData

Lyme DiseaseOpen

LymeDisease.org12,000+ participantsPatient-Reported Outcomes

Create an account at mylymedata.org. Complete surveys online from any device.

Learn More

Dysautonomia International Registry

POTSOpen

Dysautonomia International8,000+ participantsClinical Registry

Learn More

You + ME Registry

ME/CFSOpen

Open Medicine Foundation (OMF)16,000+ participantsPatient-Reported Outcomes

Learn More

ALL-IN for ME

ME/CFSRecruiting

Simmaron Research2,000+ participantsBiomarker Study

Contact Simmaron Research directly. Comprehensive biomarker panels collected at partner labs.

PROMISE Study

ME/CFSOngoing

CDC / Multi-site900+ participantsObservational

Referral through participating clinical sites. Includes 2-day clinical evaluations.

SPARK Study

Multi-ConditionRecruiting

Stanford University5,000+ participantsLongitudinal Cohort

Enroll at the Stanford Chronic Fatigue Clinic or through participating physicians.

National Tick-Borne Disease Registry

Tick-BorneOpen

Cohen Foundation / Columbia University4,500+ participantsClinical Registry

FibroForward Registry

FibromyalgiaOpen

National Fibromyalgia Association6,200+ participantsPatient-Reported Outcomes

Create a profile at fmaware.org. Monthly symptom and treatment tracking surveys.

Patient Advocacy Organizations

These organizations fund, sponsor, and coordinate invisible illness research. Many operate patient registries, award research grants, and advocate for increased NIH funding.

LymeDisease.org

Lyme Disease

Operates MyLymeData (12,000+ participant registry), funds peer-reviewed research, and advocates for improved diagnostics and insurance coverage. Their patient-centered research model has produced multiple peer-reviewed publications.

Research Participation Guide

Why Participate in Research

Advance Treatments

Shape Future Care

Access Experimental Therapies

Contribute to Knowledge

Types of Studies

How to Find Studies

Patient Rights in Research

Understanding Clinical Trial Phases

Safety

Efficacy

Comparison

Post-Market Surveillance

Active Registries & Biobanks

RECOVER

UK ME/CFS Biobank

Lyme Disease Biobank

MyLymeData

Dysautonomia International Registry

You + ME Registry

ALL-IN for ME

PROMISE Study

SPARK Study

National Tick-Borne Disease Registry

FibroForward Registry

Patient Advocacy Organizations

Write to NIH Institute Directors

Congressional Testimony

Public Comment Periods

Patient Advocacy Days

Explore Related Modules

Research Participation Guide

Why Participate in Research

Advance Treatments

Shape Future Care

Access Experimental Therapies

Contribute to Knowledge

Types of Studies

How to Find Studies

Patient Rights in Research

Understanding Clinical Trial Phases

Safety

Efficacy

Comparison

Post-Market Surveillance

Active Registries & Biobanks

RECOVER

UK ME/CFS Biobank

Lyme Disease Biobank

MyLymeData

Dysautonomia International Registry

You + ME Registry

ALL-IN for ME

PROMISE Study

SPARK Study

National Tick-Borne Disease Registry

FibroForward Registry

Patient Advocacy Organizations

Write to NIH Institute Directors

Congressional Testimony

Public Comment Periods

Patient Advocacy Days

Explore Related Modules