Through the FSGS PULSE Study, patients or their parents/guardians track symptoms, treatments, and lifestyle in the Folia app, so the everyday burden of FSGS is seen and understood. No required visits. No changes to your treatment are required.
Help your FGSG patients be seen between visits
Help FGSG patients be seen between visits
Patients can also download the Folia app and enter the invite code: PULSE-CL
About the study
The goal of the FSGS PULSE Study is to better understand and characterize the burden of FSGS and assess the real-world impact of treatment on symptoms and quality of life.
Due to the remote nature of this study, it is open to nationwide enrollment in the U.S. Patients see real-time insights about their health, and researchers see the everyday experience of FSGS.
Exclusion criteria
Currently receiving chronic kidney dialysis, including hemodialysis and peritoneal dialysis
Have received a kidney transplant
Inclusion criteria
Be diagnosed with FSGS or be the parent/guardian of a child (aged ≥8) with FSGS
Adult (≥18) living in the United States
Able to read and understand English
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 participants contribute
Weekly symptom & treatment tracking on Folia
Participants get real-time insights about their health.
Respond to short monthly check-ins in the Folia app
How to Get Involved
Partner with Folia to advance FSGS insights in and outside the clinic
In the clinic
Share study opportunity with patients in clinic or virtually
In the community
Participation in paid patient-facing community events e.g., webinars, Q&As
In the field
Co-authorship opportunities, such as presentations, panels, and manuscripts
Start referring patients and caregivers
Share your contact information and our team will follow up with everything you need, including patient-facing recruitment flyers for your clinic.
Or direct patients/caregivers to the Folia app and use invite code: PULSE-CL
