Join a remote FSGS research study
Join the remote FSGS PULSE Study for patients, parents, and guardians to help enrich research by capturing what really impacts your condition, day to day.
Interested? Let’s see if this study is a match
Download the Folia app and use the invite code “TTCPULSE” to sign up or learn how to enroll here.
What is FSGS?
Focal segmental glomerulosclerosis (FSGS) is a is a rare kidney condition that affects the kidneys' ability to properly filter the blood. This often leads to a condition called nephrotic syndrome, in which protein leaks into the urine, causing swelling, fatigue, and low albumin levels in the blood, among other symptoms. FSGS can affect both children and adults and has a range of causes, including genetic and immune-related factors.
Despite advances in care, FSGS often progresses over time and can lead to the need for dialysis or a kidney transplant — making ongoing monitoring and management a constant part of life for patients and their families.
Why are we researching FSGS?
The goal of the FSGS PULSE Study (FSGS Patient Understanding of Life, Symptoms and Experiences Study Sponsored by Travere Therapeutics) is to better understand and characterize the burden of FSGS and assess the real-world impact of treatment on symptoms and quality of life.
How it works
Life with FSGS changes over time, and this experience deserves attention. Folia is the first and only interactive tool that captures and visualizes it, letting individuals, parents, and guardians reflect on their FSGS journey while contributing to research.
The most important data doesn't live at the clinic. It lives with you.
Share weekly updates about your experiences
See real-time insights about your health
Respond to short monthly check-ins in the Folia app
Participants will be reimbursed for their time and involvement in the study.
Why tracking matters for FSGS?
Tracking your FSGS benefits both research and yourself. FSGS doesn't pause between appointments, and the moments in between hold information that can inform research, while also helping you better understand your own condition.
The Folia Health app allows people with FSGS, or their parent or guardian, to log observations, symptoms, and treatments over time. This health tracking contributes to a fuller picture of what life with FSGS really looks like, informing research that can shape how FSGS is understood and treated, while also helping you notice trends and prepare for medical appointments.
Interested in joining?
Living with FSGS?
Join this study if your experience includes the following:
Be 18 years of age or older
Be diagnosed with FSGS by a qualified medical professional
Live in the U.S.
Be able to read and understand English
NOT currently receiving chronic kidney dialysis, including hemodialysis and peritoneal dialysis
Has NOT received a kidney transplant
Caring for someone with FSGS?
Join this study if your experience includes the following:
Be 18 years of age or older
Live in the U.S.
Be able to read and understand English
Be the parent/guardian of a child (aged 8 or older) with FSGS who meets the following criteria:
NOT currently receiving chronic kidney dialysis, including hemodialysis and peritoneal dialysis
Has NOT received a kidney transplant
Diagnosis of FSGS will be confirmed through self-reported screening procedures and patient- or caregiver-supplied documentation. Confirmation of diagnosis for each participant will be reviewed by the Folia Health study team as part of standard validation procedures.
How to enroll
Review the eligibility criteria.
If the study looks like a fit, download the Folia Health app.
Use invite code “TTCPULSE” at signup to ensure you’re enrolled into the study
Review and sign the consent form (you’ll see it right after you create your account)
Reach out to [email protected] with any questions!
How does Folia protect your data?
When you join this study, only your anonymous, de-identified data is shared with researchers. It's never tied to your identity. We're fully HIPAA compliant and store your data on secure servers with additional safeguards in place, and you can update your sharing settings at any time.
Folia is free to use, so you can keep tracking your FSGS journey for as long as you'd like. Want to learn more? Read our full privacy policy here.
Join a remote study focused on informing the future FSGS care
Download the Folia app and use the invite code “TTCPULSE” to sign up today