A group of people of all ages and races to represent the NEPTUNE study patient population
Welcome to
Nephrotic Syndrome Study Network

Matching patients with  effective therapies

NEPTUNE strives to meet the urgent need to match patients to therapies that can effectively treat their rare kidney diseases.

NEPTUNE by the numbers

Ancillary studies
Enrolling Centers

Want to join the NEPTUNE study?

Thinking about participating in a clinical study? See if one of our many locations across the United States is near you!

Frequently asked questions

Why is research on nephrotic syndrome and Alport syndrome so important?

Nephrotic syndrome and Alport syndrome have an enormous impact on patients and families and can progress to kidney failure. NEPTUNE participation can significantly advance understanding of these diseases through documenting your experience, symptoms, family history, and collecting much needed biosamples for research.

Research in the NEPTUNE study takes a unique approach to better understand the causes of these diseases and the development of more effective treatments.

Why does NEPTUNE use a precision medicine approach?

The core of NEPTUNE’s mission is to improve how we treat and manage nephrotic syndrome and Alport syndrome. We believe that tailoring treatment to individual needs will lead to better outcomes for those affected by the diseases that we study.

We collect a broad range of data and biosamples in NEPTUNE so that we can dive deeply into the underlying biology and genetics of the diseases and learn what therapeutic targets may help the most for each person uniquely, not for the average person.

A precision medicine approach that does just that: personalizes treatment to unique, individual causes of disease.

What are the benefits of participating in NEPTUNE?
  • NEPTUNE provides patient education on nephrotic syndrome and Alport syndrome
  • NEPTUNE has information about clinical research and clinical trial opportunities
  • NEPTUNE can help patients and families connect with local experts
  • NEPTUNE includes a patient network and is connected with patient advocacy
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.

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.

Still have questions?

Please email one of our NEPTUNE team members.

COVID-19 (Coronavirus) – Study updates and general considerations for kidney patients
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