We started Power when my dad was diagnosed with multiple myeloma, and I struggled to help him access the latest immunotherapy. Hopefully Power makes it simpler for you to explore promising new treatments, during what is probably a difficult time.
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Paid Participation
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Key Eligibility Criteria
35 Participants Needed
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90 Participants Needed
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180 Participants Needed
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100 Participants Needed
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30 Participants Needed
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34 Participants Needed
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30 Participants Needed
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54 Participants Needed
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125 Participants Needed
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24 Participants Needed
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20 Participants Needed
"I changed my diet in 2020 and I’ve lost 95 pounds from my highest weight (283). I am 5’3”, female, and now 188. I still have a 33 BMI. I've been doing research on alternative approaches to continue my progress, which brought me here to consider clinical trials."
"I've tried several different SSRIs over the past 23 years with no luck. Some of these new treatments seem interesting... haven't tried anything like them before. I really hope that one could work."
"As a healthy volunteer, I like to participate in as many trials as I'm able to. It's a good way to help research and earn money."
"I have dealt with voice and vocal fold issues related to paralysis for over 12 years. This problem has negatively impacted virtually every facet of my life. I am an otherwise healthy 48 year old married father of 3 living. My youngest daughter is 12 and has never heard my real voice. I am now having breathing issues related to the paralysis as well as trouble swallowing some liquids. In my research I have seen some recent trials focused on helping people like me."
"I've been struggling with ADHD and anxiety since I was 9 years old. I'm currently 30. I really don't like how numb the medications make me feel. And especially now, that I've lost my grandma and my aunt 8 days apart, my anxiety has been even worse. So I'm trying to find something new."
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Each trial will compensate patients a different amount, but $50-100 for each visit is a fairly common range for Phase 2–4 trials (Phase 1 trials often pay substantially more). Further, most trials will cover the costs of a travel to-and-from the clinic.
After a researcher reviews your profile, they may choose to invite you in to a screening appointment, where they'll determine if you meet 100% of the eligibility requirements. If you do, you'll be sorted into one of the treatment groups, and receive your study drug. For some trials, there is a chance you'll receive a placebo. Across Scleroderma trials 30% of clinical trials have a placebo. Typically, you'll be required to check-in with the clinic every month or so. The average trial length for Scleroderma is 12 months.
Not all studies recruit healthy volunteers: usually, Phase 1 studies do. Participating as a healthy volunteer means you will go to a research facility several times over a few days or weeks to receive a dose of either the test treatment or a "placebo," which is a harmless substance that helps researchers compare results. You will have routine tests during these visits, and you'll be compensated for your time and travel, with the number of appointments and details varying by study.
The phase of a trial reveals what stage the drug is in to get approval for a specific condition. Phase 1 trials are the trials to collect safety data in humans. Phase 2 trials are those where the drug has some data showing safety in humans, but where further human data is needed on drug effectiveness. Phase 3 trials are in the final step before approval. The drug already has data showing both safety and effectiveness. As a general rule, Phase 3 trials are more promising than Phase 2, and Phase 2 trials are more promising than phase 1.
Clinical trials are almost always free to participants, and so do not require insurance. The only exception here are trials focused on cancer, because only a small part of the typical treatment plan is actually experimental. For these cancer trials, participants typically need insurance to cover all the non-experimental components.
Most recently, we added Stem Cell Transplant for Autoimmune Diseases, BMS-986515 for Autoimmune Diseases and ALLO-329 for Lupus to the Power online platform.
Yes—although scleroderma still has no one-shot cure, survival and quality of life have improved dramatically thanks to earlier organ screening, targeted drugs that slow lung and skin damage, and even stem-cell transplants for the most aggressive cases. Prognosis varies by subtype, but many people—especially with limited disease—now live full lifespans when they partner with a rheumatology team, stay vigilant for lung or heart changes, and tap into clinical trials and support resources. In short, progress is real and ongoing, so there truly is hope.
No agency publishes an official “#1 hospital” for scleroderma, so experts judge centers by patient volume, multidisciplinary specialists, active clinical trials, and research output. Programs that consistently meet those benchmarks include Johns Hopkins (MD), University of Pittsburgh Medical Center (PA), Hospital for Special Surgery/Columbia (NY), Stanford (CA), Mayo Clinic (MN), Cleveland Clinic (OH), and Brigham and Women’s (MA). Ask any prospective center about how many scleroderma patients it sees each year, what organ-specific teams and trials are available, and whether telehealth or second-opinion services fit your insurance and travel limits.
Scleroderma starts when a person who already carries several “risk” genes experiences an additional hit—most convincingly long-term exposure to silica dust or strong organic solvents, certain chemotherapy drugs (e.g., bleomycin), or, in a minority, an immune reaction linked to a recent cancer or infection. These triggers injure the small blood-vessel lining, the immune system over-reacts, and excess collagen is laid down, thickening skin and sometimes organs; however, in many patients no definite trigger is ever found, which is why avoiding heavy chemical exposure and staying up-to-date with routine health checks is wise but cannot fully prevent the disease.
Think “anything that injures fragile skin, clamps down blood flow, or stresses the kidneys”—those are the main things to avoid in scleroderma. That means skipping tattoos or piercings; quitting smoking, vaping, or other nicotine; keeping fingers warm and steering clear of cold aisles or ice water; and avoiding medicines that tighten blood vessels (certain decongestants, non-selective beta-blockers, migraine ergot/triptan drugs) or high-dose steroids and other kidney-toxic drugs unless your specialist says otherwise. Review every new procedure or medication with your rheumatologist so safer substitutes or protections can be arranged.
Treating scleroderma can run anywhere from about US $10–25 k per year for milder cases that need mainly clinic visits, routine tests and inexpensive medicines, to well over US $50 k—and sometimes above US $100 k—when lung or heart complications require drugs like nintedanib, bosentan or prostacyclin infusions, frequent hospital stays, or stem-cell transplant. The number you personally face depends far more on disease severity and insurance coverage than on any single “sticker price,” so the smartest move is to have your care team outline the expected treatments up front and, at the same time, apply for insurer pre-authorisation and drug-company or charity copay programs that can slash out-of-pocket costs.
It depends on what you mean by “worse.” Systemic scleroderma is rarer but more life-threatening because it can scar internal organs; even with modern care, about 15–30 % of patients die within 10 years. Rheumatoid arthritis is less deadly but far more common and can severely damage joints and raise heart-disease risk if untreated. In short, scleroderma carries the higher risk of early death, while rheumatoid arthritis more often causes long-term disability—early diagnosis and aggressive treatment are crucial for both.
Start by correcting any lab-proven deficiencies—vitamin D is low in many people with scleroderma, so your doctor may suggest 800–2,000 IU (or the dose needed to reach normal blood levels). After that, the best-studied add-ons are marine fish-oil (about 1–3 g EPA + DHA daily) and N-acetyl-cysteine, which small studies suggest can ease Raynaud’s attacks and digital ulcers; high-dose iron or vitamin A should be avoided unless you are clearly deficient. Always clear supplements with your rheumatologist or pharmacist, as kidney, lung, or esophageal involvement—and the drugs used to treat them—can change what is safe for you.
Two medicines are now FDA-approved to slow lung damage in systemic sclerosis: nintedanib (approved 2019) and tocilizumab (approved 2021). Beyond these, several therapies are showing benefit in late-stage studies—B-cell depletion with rituximab, T-cell modulation with abatacept, JAK inhibitors, cannabinoid-mimetic lenabasum, and autologous stem-cell transplant—so a rheumatologist may discuss clinical-trial or specialty-center referral if standard drugs are not enough.
Scleroderma ranges from localized skin thickening that is more of a nuisance to a systemic form that can stiffen joints, cause painful Raynaud’s attacks, and—if it scars the lungs, heart or kidneys—significantly cut stamina or even shorten life; fortunately, only a subset of patients develop these severe complications. Thanks to earlier diagnosis, blood-pressure drugs that prevent kidney crisis, medications that slow lung scarring, and physical/occupational therapy, most people now remain independent and 10-year survival is roughly 75–85 %, so close monitoring with a rheumatologist is key to limiting how debilitating the disease becomes.
Yes—done correctly, regular walking can help many people with scleroderma by improving blood flow to the fingers and toes, keeping joints and skin less stiff, and boosting heart-lung fitness and energy levels; small studies even show gains in grip strength and walking distance after supervised programs. Start with short, comfortable walks (5-10 minutes) on level ground, dress warmly to protect against Raynaud’s, use well-fitting shoes if you have foot ulcers, and have your doctor or physiotherapist adjust the plan if you have lung involvement or pulmonary hypertension. Think of walking as one part of an overall movement routine—aim for about 150 minutes a week of gentle activity, adding stretching or hand exercises—as tolerated and monitored by your care team.