FSR strives to bring patients the most up-to-date information about sarcoidosis, but we can’t do that without you. Besides being a rare disease, affecting only 200,000 people in the U.S., sarcoidosis is commonly misdiagnosed. The limited data that does exist doesn’t always include all the information we need to work towards a cure. That’s where you come in.
The FSR-SARC Patient Registry (standing for Sarcoidosis Advanced Registry for Cures) is an entirely online platform where you can input your or a family member’s data to help researchers better understand the day-to-day challenges of living with sarcoidosis. The information you provide is processed through a HIPAA-compliant database so you can be comfortable knowing your data will always be safe and secure. Everything you provide is then de-identified before it’s shared with researchers.
We recognize that historically, communities of color and lower income populations have been under-served and underrepresented in the fight against sarcoidosis and in finding a cure. FSR is committed to understanding how sarcoidosis impacts all communities regardless of race, socioeconomic status, education level or gender.
The registry is a 72 question survey designed to address the gaps in current research and takes about 45 minutes to complete. It covers a broad range of topics, from the basics like initial diagnosis, symptoms, and treatment history all the way to the impact of sarcoidosis on your daily quality of life, including financial challenges, impact on personal relationships, and more.
All of these topics help us work towards finding a cure while also giving us information on how to better treat those with sarcoidosis.
When you complete the initial survey to join the Patient Registry, we are one data point closer to finding a cure, but you can help even more by coming back. The Patient Registry is meant to provide researchers longitudinal data as well, showing how patients’ experiences change over time. For one researcher, this could mean looking at the long-term financial impact of the disease with the goal of changing how insurance companies view patients with sarcoidosis. For another, it could mean tracking how certain symptoms change over time in response to a specific treatment in order to determine which treatments might work best for certain kinds of sarcoidosis. The more you come back and update your registry profile with your treatment changes, your struggles, and your achievements, the more we can help others and shape the future of sarcoidosis research to find better treatments and one day, a cure.
The data collected is valuable to researchers working to better understand sarcoidosis and make a difference in the day-to-day lives of those struggling with the disease. The more long-term data we have to share, the more outside researchers will become interested in helping to find a cure.
If you have joined the registry but can’t remember your login information, just email firstname.lastname@example.org or call 312-341-0500.
The FSR-SARC Registry looks to answer questions like:
- What causes sarcoidosis?
- Who needs to be treated and when is the ideal time to start?
- Which medication works best for different organ involvement?
- Which available treatment works best for certain individuals and when is the best time to switch treatments?
- What is the best way to measure whether a treatment is working?
- Most importantly, what is the cure for sarcoidosis?
If you are looking to participate beyond completing the Patient Registry, there is an option in the survey to agree to be contacted for future clinical trials. Your contact information will never be shared with anyone outside of FSR. If there is a clinical trial in your area that you might qualify for, you will receive an email directly from FSR letting you know about the research opportunity.
If you know someone in your community that also has sarcoidosis, please encourage them to consider joining the FSR Patient Registry as well!