How do I learn more about current open studies?
How do I participate in a study?
6801: The Nephrotic Syndrome Study Network (NEPTUNE) Longitudinal Cohort
NEPTUNE is a study network to improve the identification and management of patients with Nephrotic Syndrome (NS) from M inimal 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?
- NEPTUNE provides patient education on NS diseases
- NEPTUNE has information about clinical research and clinical trial opportunities in NS
- NEPTUNE can help patients and families connect with local experts
- NEPTUNE includes a patient network and is connected with patient advocacy
For More Information: Visit NEPTUNE at clinicaltrials.gov
FAQs for NEPTUNE Participants
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.
Other Nephrotic Research
Studies listed below are not part of NEPTUNE
- Cure Glomerulonephropathy Network (CureGN)
- Randomized, Double-Blind, Safety and Efficacy Study of RE-021 (Sparsentan) in Focal Segmental Glomerulosclerosis (DUET)
- Study of Losmapimod to Reduce Proteinuria in Idiopathic FSGS
- Rituximab Plus Cyclosporine in Idiopathic Membranous Nephropathy
- Retinoids for Minimal Change Disease and Focal Segmental Glomerulosclerosis
- Vitamin D Supplementation in Glomerular Disease
Patient Support and Advocacy Groups
Patient advocacy groups specializing in kidney disease and nephrotic syndrome are here to help you. They are devoted to providing support, resources and services for patients and families. Join these groups to help yourself, your family, and other patients.
NephCure Kidney International
NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure. NephCure also supports patients and their families with a variety of resources depending on your individual interests.
Halpin Foundation is a non-profit medical research organization that provides support to the medical community by offering grants for kidney disease research and autoimmune disease research. To learn more or to join the Contact Registry for Membranous Nephropathy, visit: www.halpin.org
Any administrative concerns can be addressed to:
NEPTUNE Project Manager
Division of Nephrology
University of Michigan
1150 W Medical Center Drive
Ann Arbor, Michigan 48109-5657
Phone: (734) 615-5020
Looking for specific contact information for one of our participating centers?
Please visit our Participating Clinical Centers
This consortium is part of RDCRN, an initiative of ORDR, NCATS