Estimated reading time: 6 minutes
“I am here today because of a clinical trial.”
Theresa Costello, Lupus Warrior
When Theresa Costello was diagnosed with lupus 21 years ago, there were no FDA-approved drugs specifically designed to treat the disease. Faced with few options, in her first lupus clinical trial, a decision that, in her own words, saved her life. Her story is a powerful reminder of why clinical research matters, and why patient participation is the engine that drives medical progress.
UCF Health had the honor of sitting down with Theresa at a Lupus Foundation of America event to hear her message firsthand. What followed was one of the most compelling conversations we’ve had about the intersection of patient advocacy, autoimmune disease research, and the future of lupus treatment.
Table of contents
- Why Lupus Clinical Trials Matter for Patients
- Theresa’s Story: A Hail Mary That Changed Everything
- How to Find Lupus Clinical Trials Near You
- The Different Phases of Clinical Trials — What Patients Should Know
- Why Patient Data Is the Missing Piece in Lupus Research
- Frequently Asked Questions About Lupus Clinical Trials
- Ready to Take the Next Step?
Why Lupus Clinical Trials Matter for Patients
Clinical trials are research studies conducted with human participants to evaluate new treatments, medications, or medical approaches. For people living with lupus, a chronic autoimmune disease that affects millions of Americans, clinical trials are not just a medical option. They are often a lifeline.
Lupus causes the immune system to mistakenly attack healthy tissue, leading to inflammation and damage in the joints, skin, kidneys, heart, and other organs. Because every lupus patient presents differently, finding effective treatment is an ongoing and deeply personal challenge.
As Theresa explained during our conversation:
“Clinical trials are the only way to advance disease progress and get the medications that we need to treat our disease. Without research and clinical trials, there would be no medications. There would be no advancement. Everything would stop.”
This isn’t hyperbole, it’s medical reality. The drugs available today for lupus treatment, including belimumab and other targeted biologics, exist because patients like Theresa participated in clinical trials years ago. The next breakthrough depends on patients stepping forward now.
Theresa’s Story: A Hail Mary That Changed Everything
Theresa was enrolled in her first clinical trial shortly after her lupus diagnosis, at a time when lupus-specific medications were virtually nonexistent. The trial gave her access to an experimental treatment that worked, for eight years. Then, as is common with autoimmune conditions, her body adapted and the medication lost its effectiveness.
Rather than losing hope, Theresa returned to the world of clinical research. She sought out new trials, new therapies, and new opportunities to fight back against the disease. Today, she continues that journey and uses her experience to encourage others to do the same.
“Every lupus patient is different. And that’s what makes this disease so hard.”
This individuality is precisely why diverse patient participation in clinical trials is so critical. The more data researchers have from a wide range of lupus patients, across different ages, ethnicities, disease severities, and symptom profiles — the closer we get to treatments tailored to each unique case.
How to Find Lupus Clinical Trials Near You
One of the most practical takeaways from Theresa’s interview is the simplicity of getting started. Finding a clinical trial doesn’t require a medical background or a referral from a specialist. It starts with a zip code.
Step 1: Visit lupus.org
The Lupus Foundation of America’s website (lupus.org) maintains an up-to-date clinical trial finder. Simply visit the site, click on the clinical trial link, enter your zip code, and you’ll receive a list of active studies in your area, or nearby trials you may qualify for.
Step 2: Use the RAY App
RAY , which stands for Research Accelerated by You, is a free, anonymous data platform developed by the Lupus Foundation of America. It allows lupus patients to contribute health data directly to researchers without enrolling in a formal trial. The information is securely anonymized and aggregated, helping scientists identify patterns and prioritize areas of research.
Theresa describes it as giving patients a voice:
“It gives the researchers and the scientists the information anonymously and collectively so that they can find a cure that’s specific for each lupus patient.”
Step 3: Search ClinicalTrials.gov
For a broader national search, ClinicalTrials.gov is the gold standard. Patients can filter trials by condition, location, age, and phase of research. Theresa notes that even if a specific trial isn’t the right fit, it will often connect you to related studies that may be.
The Different Phases of Clinical Trials — What Patients Should Know
Clinical trials are conducted in phases, each with a specific purpose and level of participant involvement:
Phase I:
Tests a new treatment’s safety in a small group of participants, often for the first time in humans.
Phase II:
Expands the study to a larger group to evaluate effectiveness and further assess safety.
Phase III:
Compares the new treatment against current standard treatments across hundreds or thousands of participants.
Phase IV:
Conducted after FDA approval to monitor long-term effects and gather additional data.
Patients can participate at any phase depending on their health profile, disease stage, and eligibility criteria. Theresa’s message is clear: don’t wait for the perfect trial — even contributing anonymized data through an app like RAY counts as meaningful participation.
Why Patient Data Is the Missing Piece in Lupus Research
Autoimmune diseases like lupus are notoriously difficult to study. Symptoms fluctuate. Triggers vary by patient. The disease manifests differently across racial and ethnic groups, with Black women disproportionately affected — and yet historically underrepresented in clinical research.
This is why every data point matters. When patients submit information through platforms like RAY — about flares, fatigue levels, medications, and quality of life — they are directly fueling the algorithms and analyses that could lead to a cure.
“In order to be free from lupus, we have to have a cure. And the only way we can get a cure is by patient data and patient involvement.”
UCF Health is proud to support this mission by amplifying voices like Theresa’s and connecting our patients and community with research opportunities through trusted organizations like the Lupus Foundation of America.
Frequently Asked Questions About Lupus Clinical Trials
All clinical trials conducted in the United States are regulated by the FDA and must meet strict ethical standards. Participants are fully informed of risks before enrolling and have the right to withdraw at any time without penalty.
No. Trials vary widely in their eligibility criteria. Some focus on newly diagnosed patients, while others are designed for those with long-standing disease or specific organ involvement. The clinical trial finder at lupus.org can help match you with appropriate options.
The RAY app by the Lupus Foundation of America is an excellent option. It allows you to contribute health data anonymously — without any medical procedures or treatment changes — and still make a meaningful contribution to research.
Duration varies widely depending on the phase and the treatment being studied. Some trials last a few weeks; others run for several years. Trial listings on lupus.org and ClinicalTrials.gov include estimated timelines.
Ready to Take the Next Step?
Whether you’re a lupus patient, a caregiver, or simply someone who believes in the power of medical research, there are concrete actions you can take today:
- Visit lupus.org to find clinical trials in your area.
- Download the RAY app to contribute anonymized data to lupus researchers.
- Share this article with someone in your lupus community — awareness is the first step.
- Follow UCF Health on social media for more patient stories, research updates, and health resources.
Theresa Costello has spent 21 years fighting lupus, not just for herself, but for every patient who comes after her. At UCF Health, we are honored to stand alongside warriors like her and to connect our community with the resources and research that can make a real difference.
The cure starts with you. 💜
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- autoimmune disease Clinical Trials health tip healthy living lupus rheumatologist rheumatology ucf health patients