6801: The Nephrotic Syndrome Study Network (NEPTUNE) Longitudinal Cohort

Status: Recruiting

NEPTUNE is a study network to improve the identification and management of patients with Nephrotic Syndrome (NS) from Minimal Change Disease (MCD), Focal and Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN).  NEPTUNE includes study sites located at universities and medical facilities across North America and brings together patients, patient advocates, doctors and scientists working together to find better treatments for NS. The network allows experts from many areas to share research information to fast-track results that lead to new discoveries.

Why is research on Nephrotic Syndrome so important?

Because We Don’t Know Enough Yet. NS can lead to kidney failure and has an enormous impact on patients and families.  The number of people with NS is increasing and causes and effective treatments are still unknown. Research involving patients with NS can lead to a better understanding of the causes, more effective treatments and help find cures.

Why Minimal Change Disease (MCD), Focal Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN)?

These are common causes of NS in adults and children.

Other Benefits of NEPTUNE?

For More Information: Visit NEPTUNE at clinicaltrials.gov

Click here for a list of our Participating Clinical Centers

What else do I have to do to be in NEPTUNE besides my regular doctor's orders?

We would like extra blood and urine at every visit, and sometimes we are going to request you to save your urine for 24-hours and bring it to us. Participating in NEPTUNE will not require any further treatment or obligations for your health care. The research is voluntary, but as a participant we would like you to complete study visits.

If I agree to participate in NEPTUNE, will I have to see my doctor more often?

Your NEPTUNE Research Coordinator will work with you to try to schedule the study visits at the same time as your regularly scheduled doctor's visit. However, due to the follow-up periods, particularly in Year 1, you may need to come to the hospital/institution an extra time or two, but you will not need to see your doctor for study visits.

Will participating make my doctor treat me different?

Your participation in NEPTUNE will not change any care you would normally receive for your kidney disease.

Will it cost anything to be in NEPTUNE?

You will not be billed for any samples collected for the NEPTUNE study. All samples will be processed by study staff and no clinical tests will be performed on any samples that could be billed to you or your insurance.

Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.