Why Sarcoidosis Trials are Important

What is a Clinical Trial?

A clinical trial is part of the research process used to help manage or treat a disease or condition. Trials typically occur after some baseline research into a new treatment has taken place and advanced research is necessary to move the theory forward. The end result is always to gain a greater understanding of the disease, identify possible future treatment options, and improve the quality of life for patients afflicted with the disease.

Types of Trials

Trials can be as simple as just collecting basic information about symptoms of an illness to as complex as experimenting with new medications to treat a disease. Some trials, especially for rare diseases, ask for a DNA sample and additional background and/or family data to look for genetic answers to illnesses. Others watch specific health measures – vitals, breathing tests, x-rays, etc. – over a longer period of time to assess disease progression.

Why are Trials so Important?

All trials – whether they are simply filling out a questionnaire or using a developmental drug – are important. Trials are even more important for rare diseases like sarcoidosis because little is known about the cause of the illness and treatment options are limited. Lately, there has been an increase in focus on sarcoidosis, so we are seeing more and more trials coming out. This heightened interest is bringing new partnerships and more opportunities than ever before. However, participation from sarcoidosis patients is essential to make sure the trials are successful and show these new partners that their investment in researching our disease is worthwhile.

My Trial Experiences

I became involved in sarcoidosis research and trials about three years ago, and I have now participated in four different studies. My sarc-specialist (the famed Dr. Robert Baughman) introduced me to an observational study that tested my lungs and key performance measures (including the dreaded 6-minute walk) over an 18 month period. Another had me wear an activity monitor (think Fitbit) for a year, and complete in-person and online surveys about how I was feeling each quarter. At the end of that one, I got to keep the activity monitor too! I have donated my DNA to an international study, and am quite comfortable with the personal identity/security safeguards put in place. I’ve heard that the genetic research is producing some early results that scientist are using to advance treatments. Finally, I also participated in a developmental drug study for about 6 months, where I took a combination of medications each day and my health was closely monitored. The study continued for another 6 months, but I had to stop due to an unrelated health issue. My doctor, however, let me know that one of the experimental drugs was being put in use by other patients, as it was found to be effective!

What’s in it for Me and How Can I Get Involved?

So often, we get frustrated by this disease because there is so little we can do to advance our treatment. However, clinical trials can be your chance to be proactive and join the fight to find a cure for sarcoidosis. It is highly unusual for a brand new treatment or drug to be developed for a rare disease like sarcoidosis, so when it does happen, we need to make sure the trials are successful. Plus, most trials have some form of token compensation for participation. You won’t get rich, but it’ll at least cover your gas going to check-ins and you can feel like you are part of the solution to our struggles.

How to Get Started

First, talk to your health care team about joining a trial. They should be in the know about anything in your area, and they can give you guidance on if you are physically eligible to participate. Next, in case your doctor is uninformed or does not recommend you for a trial, sign up for the Newsletter by the Foundation for Sarcoidosis Research. or you can search for clinical trials near you on FSR’s website.

Find a Clinical Trial

Sign up and complete the information for the Sarcoidosis Advanced Registry for Cures (SARC). Your information and survey answers will be added to those from patients around the world to help get a better handle on this disease and how it effects our lives. All of your information is confidential.

Join Our Patient Registry

The US National Institute of Health (NIH) operates a Clinical Trials website where you can search for trial opportunities. Be advised, however, that this site lists trials for every disease, so it takes some time to filter your way through to find the ones that interest you (That’s why subscribing to the FSR Newsletter and Registry are first steps…they jump you ahead to get you the best info more quickly!)

Search For More Trials Through NIH

Bottom line – Trials are important. Your participation is critical. You are a sarc warrior and this is a chance to join the fight!

Current studies for sarcoidosis:

Jim Kuhn

In 2014 I was diagnosed with sarcoidosis in my lungs, lymph nodes, eyes and skin. Earlier this year I was also diagnosed with neurosarcoidosis. The illness has caused me chronic fatigue and chronic pain, that is often debilitating. I was forced to ‘medically retire’ in 2016 because of my sarcoidosis and have been on permanent disability since then. I struggle with keeping to any schedule (like a normal work day) due to the fatigue, along with cognitive issues (fuzzy brain & concentration), balance, and stamina. In my ‘old life,’ before sarcoidosis, I spent 30+ years as a global business leader, primarily in technology services. My last 5 years of ‘work’ were spent as a full time missionary with my wife, with a global medical mission group. We would take medical and non-medical teams to developing countries and put on week-long (or longer) free medical, dental, vision, and pharmacy clinics. It was amazing, and I hated to leave it. I find I can only manage a couple hours of anything on a day to day basis. So, I try to squeeze in things I like, such as flower gardening, movies, and travel with my wife.