Resources for patients

Find resources to help you determine if joining the NEPTUNE study is a right fit for you or someone you care for.

Check out our patient advisory board and advocacy groups for other ways to get involved!

Am I eligible?

You may be eligible for the NEPTUNE study if you answer ‘yes’ to one of the following questions.

Are you or will you soon be scheduled for a kidney biopsy?

You may be eligible for our biopsy cohort if:

You are scheduled for your first kidney biopsy and your doctor thinks you may have FSGS, minimal change disease, or membranous nephropathy.

Note: If you are suspected to have Alport syndrome, there is a separate study specifically for Alport syndrome patients that includes both a biopsy and non-biopsy cohort.  See information below for that study.


You are scheduled for a repeat kidney biopsy and your kidney biopsy results in the past showed FSGS, minimal change disease, or membranous nephropathy.

The biopsy must be done at a NEPTUNE study site. Contact us for more information, including which NEPTUNE study site is best for you.  

Are you under 19 years old and have newly been diagnosed with nephrotic syndrome?

You or your child may be eligible for our non-biopsy cohort.

To be eligible, participants must not have had steroid treatment (immunosuppression therapy) for more than 30 days.

Contact us for more information, including which NEPTUNE study site is best for you.

Have you been diagnosed with or does your doctor suspect you have Alport syndrome?  

You may be eligible for our Alport syndrome cohort if at least one of the following are true:

  • Prior confirmatory biopsy or a genetic test result that identifies Alport syndrome OR
  • Hematuria (blood in urine) or proteinuria(protein in urine) AND hearing loss, OR
  • Family history of Alport syndrome

Contact us for more information, including which NEPTUNE study site is best for you. Travel support from the Alport Syndrome Foundation is available.

In the past, have you been diagnosed with FSGS, minimal change disease, membranous nephropathy, or childhood nephrotic syndrome?

You may be eligible to join the NEPTUNE study if you are also eligible for and interested in NEPTUNE Match. Read below to learn more about NEPTUNE Match and to see if you may be able to participate using the eligibility calculator.

IMPORTANT NOTE: The eligibility requirements in NEPTUNE Match changes depending on the clinical trials we partner with.  If you are not eligible today, please continue to check back as you may be eligible in the future.

About NEPTUNE Match

We are currently matching to the following partnered clinical trials in NEPTUNE Match:


    A double-blinded, randomized trial of baricitinib therapy for APOL1-associated focal segmental glomerular sclerosis (FSGS) or Hypertension Associated-CKD

  1. TRPC6 Inhibition in FSGS

    Randomized, double-blind study to investigate the efficacy, safety, and tolerability of BI764198 vs placebo in focal segmental glomerular sclerosis (FSGS).

  1. EPPIK

    Open label clinical trial of Sparsentan to evaluate safety and efficacy on proteinuria and kidney function in children with focal segmental glomerular sclerosis (FSGS), minimal change disease, IgAN, IgAV, and Alport syndrome.

  1. TNF Precision Medicine

    A proof of concept, open label clinical trial addressing the treatment of patients with focal segmental glomerular sclerosis (FSGS) or treatment resistant minimal change disease.

To help determine if you can participate, please use the calculator below. Contact us for more information, including which NEPTUNE study site is best for you.

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!

NEPTUNE Patient Advisory Board

Join the NEPTUNE patient advisory group

NPACT: Patient Advisory Council for Therapies

What is the purpose?

To provide an opportunity for patients
and caregivers to share their journey and
perspective about living with glomerular
kidney disease. Researchers will use this
and further feedback to improve:

  • Research study design
  • Patient materials
  • How patients are approached
  • How to communicate study results

Who is eligible to particpate?

Patients of all ages and parents of children
diagnosed with: 

  • Minimal Change Disease (MCD)
  • Membranous Nephropathy (MN)
  • Focal Segmental
    Glomerular Sclerosis (FSGS)
  • Nephrotic syndrome
  • Alport syndrome

What is required?

Ability to share your story, provide feedback,
and engage with others on conference calls
2 to 3 times yearly to impact future research.

For more information



Patient support and advocacy

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.

The NEPTUNE patient community
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.

Download NephCure brochure

Halpin Foundation

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.


Alport Syndrome Foundation

Alport Syndrome Foundation is the leading patient-led, independent, non-profit organization in the United States educating and giving a voice to the Alport syndrome community.

Their mission is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy and research. Their vision is to conquer Alport syndrome.