As a research consortium of physician scientists at 26 sites in the United States and Canada, along with patient advocacy groups NephCure Kidney International and the Halpin Foundation, NEPTUNE strives to bring the latest advances in research to patients diagnosed with Focal Segmental Glomerulosclerosis (FSGS), Minimal Changes Disease (MCD), and Membranous Nephropathy (MN) with an overarching goal of utilizing precision medicine for rare diseases.
NEPTUNE aims to understand what causes Nephrotic Syndrome (NS) and has captured information derived from clinical data and patient reported outcomes, as well as information from kidney biopsy tissue, blood, and urine samples. With this rich knowledge base and biological specimens, NEPTUNE now will transition from observing how NS impacts patients to finding new and effective ways to treat the disease. Most importantly, NEPTUNE will match the disease triggers, that are active in an individual patient’s kidney, to targeted clinical trials in pre-competitive partnerships with leading companies developing novel treatments for NS.
NEPTUNE is a member of the Rare Disease Clinical Research Network (RDCRN). The RDCRN, an NCATS initiative, includes 20 rare disease consortia which all strive to identify the causes, risks of progression, and potential new therapies for a broad spectrum of diseases.
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
Frequently Asked Questions
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.
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.
Your participation in NEPTUNE will not change any care you would normally receive for your kidney disease.
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.
This test is the best way to measure urine protein.
How do I properly collect a 24 hour urine sample?
The NEPTUNE study (or your medical center) provides specific instructions for participants. In general, 24 hour urine collection is started in the morning.
- Do NOT save the first urine of the day, but mark this as your START time.
- Save all urine for the next 24 hours in the provided bottle.
- The last urine sample should be as close to the start time as possible and MUST be saved.
- Keep the bottle in the refrigerator or on ice until your research appointment.
What if I need to collect a urine sample while away from home?
If you need to leave your house for several hours, take a backpack with clean wide mouth containers (such as a sports drink bottle) and a large plastic zip-top bag of ice. After collecting your sample in the container, store it on ice in the zip-top bag. Upon returning home, transfer your stored samples to the provided urine storage container.
What happens if I miss collecting a urine void?
For the 24 hour urine test to be accurate, all urine voids must be collected. Let your study team member know if you missed one or more samples.
How do I transfer my urine sample to the research visit?
Be sure the lid of your urine collection container is on tight to avoid leaks. If it is warm out, please use ice or a cooler to preserve the sample during transportation.
How far in advance can I collect my 24 hour urine sample?
The urine sample can be collected up to 4 days before your scheduled research appointment, as long as it is preserved on ice.
The last decade has seen great progress in science technology. The goal of personalized medicine (sometimes called precision medicine) is to use new scientific tools to understand disease based on individual differences in genetics, biology, and environment.
What is the goal of personalized medicine?
The goal is to move away from “one size fits all” treatments and to personalized care. Researchers want to bring new technologies to clinical care so that doctors can deliver the most effective and safest treatment to the individual.
What is a biomarker?
A biomarker is a measurement that provides specific information about a person’s health. A biomarker can be in the form of a blood or urine test, a gene or even a molecule in tissue. Biomarkers are the key to delivering personalized medicine.
How will biomarkers help people with kidney disease?
Biomarkers will be used to make a diagnosis, give individual and personalized information about prognosis, and to monitor treatment responses. As scientists discover new biomarkers, they also can provide new treatments to test in kidney disease.
How will NEPTUNE use my samples and information to find biomarkers?
NEPTUNE engages scientists from around the world to study the research samples provided by participants. To identify biomarkers of kidney disease, researchers use modern scientific tools (for example, genetics) and track an individual patient’s health in large databases. Researchers make all efforts to keep the information confidential. Your contributions will help change the future treatment of kidney disease.