Bullhorn icon Welcome to Long Covid Studies! For background on this project, please read the about page or this recent article in The Sick Times.

About Long Covid Studies

Long Covid Studies makes it easy to find Long Covid research studies near you!

Why LCS? It's still too difficult for people with Long Covid to contribute to the science of curing our condition.

With thousands of scientists working on hundreds of studies worldwide, it can be hard for people with Long Covid to find studies that they might be eligible for. Most studies (in the United States, at least) are listed on ClinicalTrials.gov , a complicated website designed for researchers and regulators — not patients. LCS harnesses the data provided by the ClinicalTrials.gov API , but shows only the most relevant information for patients, in a way that they can more easily understand.

My main goal with LCS is to make sure that Long Covid studies are fully enrolled, by diverse groups of participants, as quickly as possible — all while giving people with Long Covid the knowledge and context they need to make informed decisions about their own health.

What is a research study? What is a clinical trial?

Research studies and clinical trials are experiments run by academic, nonprofit, government, and commercial researchers to find answers to questions about health and biology. Studies can be observational (meaning that they just gather data about the people being researched), or interventional (meaning that they are gathering data about the effect of a treatment or drug). Usually, the phrase “clinical trial,” refers to an interventional research study that is testing a treatment. Long Covid Studies (and the site's primary data source ClinicalTrials.gov ) lists both observational studies and interventional clinical trials.

There are a huge variety of research studies and clinical trials, and study designs are often different depending on the kinds of questions being asked. In the future, we hope to share more information here about types of studies. For now, please make sure you understand what a study is measuring and testing prior to your participation.

I'm considering participating in a study. How do I know if it is safe?

All research carries some amount of risk for participants. As a result, all studies must be approved by Institutional Review Boards (IRBs), panels of experts that determine whether studies' potential benefits outweigh their potential risks. As a participant in a study, you will undergo a process called Informed Consent where researchers will help you understand the requirements of the study, the potential risks, and the potential benefits. Once you understand those factors you'll be asked to agree to participate in the study. You can always change your mind, even after you've joined. Research teams will tell you what to do and who to contact if you want to drop out of a study early. You can always reach out to the head researcher, or Principal Investigator (PI) of any study if you have questions or concerns.

Some studies are more dangerous than others. In particular, people with post-exertional malaise should carefully consider whether the exertion of participating in a study is worth the risk of symptom exacerbation — particularly if that study is testing exercise therapy. It is important to prioritize your own health and speak to a medical professional about potential risks before agreeing to participate in any research study.

What is Long Covid?

Long Covid is the continuation of symptoms, or appearance of new symptoms, following a Covid-19 infection that cannot be explained by any other diagnosis. “Long Covid” is a patient-created term that comprises over 200 different symptoms , and is believed to affect at least 65 million people worldwide . Studies show that 10-20% of Covid-19 infections result in Long Covid .

Long Covid can be mild, like an ongoing loss of smell or taste, it can be severe, rendering patients completely bedbound, or it can be somewhere in between. Long Covid symptoms often wax and wane over time. Long Covid can affect people at any age and at any level of health prior to Covid-19 infection.

About 50% of people with Long Covid meet the diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) , an often debilitating neuroimmune condition . The most unique symptom of ME/CFS is Post-Exertional Malaise (PEM) , when physical, mental, or emotional exertion worsens other symptoms, often for extended periods of time.

Many people with Long Covid also have dysautonomia, a dysfunction of the autonomic nervous system. One common diagnosis is Postural Orthostatic Tachycardia Syndrome (POTS), where a patient's heart rate while upright is substantially higher than when lying down. Mast Cell Activation Syndrome (MCAS) is an immune system disorder common in people with Long Covid. On this website, we focus on research studies targeting Long Covid, but research studies in these related conditions, as well as other infection-associated chronic conditions (IACCs) may be relevant for people with Long Covid. We hope to add more of these studies to Long Covid Studies in the future.

Some organizations use other terms for Long Covid, like Post Covid Condition (PCC), Long-haul Covid, Post-Acute Sequelae of Covid-19 (PASC). All of these terms mean essentially the same thing. We use Long Covid on this website because it is the term most commonly used by patients.

I think I might have Long Covid. What should I do?

If you think you might have Long Covid, it's very important to see a doctor or other medical professional as soon as possible. Long Covid can bring about all sorts of additional risks and complications, so it is critical to get appropriate testing, treatment, and advice.

Unfortunately, there are currently no tests specifically for Long Covid, nor are there any FDA-approved treatments. There are still large questions about Long Covid, and many doctors are not up to date on the research — so it can be helpful to find a doctor open to reading the latest research findings, or a doctor who treats other patients with Long Covid.

Some medical centers have opened Long Covid Clinics that are designed specifically to help patients with Long Covid. One list of Long Covid Clinics is here . But many patients with Long Covid have found compassionate primary care providers who are managing their treatment. Online support groups are great sources of referrals to caring and knowledgeable providers.

In the meantime, here are some resources that may be helpful:

About Me

My name is Ezra, and I got Long Covid after a Covid-19 infection in September 2022. For months, my symptoms were debilitating, and I wasn't able to access helpful medical care. So I dug into the Long Covid research literature, and over the months since have learned a lot about ongoing research projects. I've been so inspired by the researchers tirelessly working to understand and find cures for Long Covid, and I wanted to do what I can to help. I also learned about research studies in my area and decided to join several. Contributing to the scientific effort by participating in both observational research studies and an interventional clinical trial have been meaningful and validating experiences for me, and I want others to be able to have those experiences too.

I strongly believe that treatments and cures to Long Covid are possible — but it will take the concerted effort of both the research and patient community (not to mention government and other funders!) to ensure that science is done well, and done quickly. I've been inspired by patient-led efforts like the Patient-Led Research Collaborative , Body Politic , and Long Covid Moonshot — and LCS is my small contribution to the community's efforts.


If you have any questions about Long Covid Studies, please feel free to contact me at info@longcovidstudies.net . I welcome feedback about LCS, and I'd love to hear suggestions from patients, researchers, the private sector, funders, and regulators about how it could be more useful. You can also sign up for our email newsletter here .

If you are a researcher contacting me to update information about a study, please note that all study data is currently sourced from ClinicalTrials.gov , and will sync once updated there. If any studies are missing from the website, please let me know — at this time we are only able to include studies investigating Long Covid registered at ClinicalTrials.gov .

Please note that I am not associated with any of the studies listed on this website, so unfortunately I won't be able to answer questions about listings or connect you to researchers.

Long Covid Studies is a project that I work on in my spare time for the benefit of the Long Covid patient and research community. If you would like to support the ongoing operation and future development of this project, please consider making a donation. Your donation will offset hosting and service fees (which add up!), and will help sustain the work I put into building and maintaining the website.

You can use the buttons below to make a one-time donation of any amount or a monthly recurring donation. Donations are processed securely by Stripe and many forms of payment are accepted (including credit card, Apple Pay, Google Pay, and Cash App Pay). Donations to Long Covid Studies are not tax deductible.

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You can also help support Long Covid Studies by sharing this website with people with Long Covid, Long Covid support groups, Long Covid researchers, and journalists covering Long Covid.