About NEPTUNE
The Nephrotic Syndrome Study Network (NEPTUNE) is a multi-year, multi-site collaborative study that conducts clinical and translational research on:
- Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), and Membranous Nephropathy (MN) that present as Nephrotic Syndrome (NS)
- Pediatric incident NS without a diagnostic kidney biopsy
- Alport syndrome
FSGS, MCD, and MN are rare kidney diseases that are common causes of nephrotic syndrome. Nephrotic syndrome occurs when there is a problem with the kidney filtering system causing bloodstream proteins to leak into the urine.
Alport syndrome is a rare kidney disease that is genetically passed down in families, although it can occur spontaneously and individuals may be the first in their family to have it. The disease causes kidney function to decrease and may also cause hearing loss, eye abnormalities, and other potential complications.
Goals
Data and Biospecimens
Recruit and maintain follow-up into longitudinal cohorts for NS and Alport syndrome
Discovery and Innovation
Identify activated molecular pathways in individual NS patients and match them with clinical trials that target candidate mechanisms
Disseminate Research
Facilitate robust and innovative translational research through the ancillary studies program
Training
Support and train the next generation of glomerular disease investigators
How we achieve NEPTUNE's goals
NEPTUNE captures clinical data, patient-reported outcomes, kidney biopsy images and tissue, blood, and urine samples from study participants.
We use the data and biosamples to investigate the underlying biology of the diseases within each of our study participants.
Since its inception, NEPTUNE has taken a precision medicine approach to address the heterogeneity of nephrotic syndrome through discovery and innovation that considers the individual differences in the underlying biology of disease. Click here to learn more about NEPTUNE’s mission.
NEPTUNE Match
NEPTUNE Match is our newest study that gives participants information about which clinical trials may be a “match” to them by using their individual research data and samples collected from the NEPTUNE study.
NEPTUNE strives to match participants to clinical trials because we know that even if two people have the same diagnosis and are suffering from the same symptoms, what is causing the disease in one person may be different than what is causing the disease in another.
NEPTUNE Match takes individual participant data from their participation in the NEPTUNE study to better understand what is causing their kidney disease and attempts to share how they match to participating clinical trials.
Because different clinical trials offer different treatments, some of the treatments offered may better target the underlying biology, or cause, of the participant’s kidney disease.
Who we are
NEPTUNE is a multi-center consortium led by Matthias Kretzler, MD, University of Michigan. The network includes:
- 31 enrolling sites in North America
- 3 patient advocacy groups, NephCure Kidney International, Halpin Foundation, and Alport Syndrome Foundation.
- Public-private partnership program for 3rd-party collaborations.
NEPTUNE is a member of the Rare Disease Clinical Research Network (RDCRN). The RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing.
How we are organized
NEPTUNE is organized into the following activity groups:
Data Analysis and Coordinating Center (DACC)
The DACC is responsible for generating and analyzing data, supporting collaborative research, and providing the organizational and scientific support for the full NEPTUNE consortium.
Enrollment sites
Enrollment sites are responsible for recruiting study participants with nephrotic syndrome and Alport syndrome and for conducting study visits according to the protocol.
Ancillary studies program
The ancillary studies/pilot program is responsible for facilitating scientific use of NEPTUNE data, biospecimens, biopsy slide images, and infrastructure.
Career enhancement program
The career enhancement program is responsible for the NEPTUNE fellowship funding mechanism and for opportunities for junior investigators to develop research skills in glomerular science.