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?
There are different ways that you can join NEPTUNE.
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.
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.
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.
You may also join NEPTUNE if you are eligible for and interested in joining NEPTUNE Match.
NEPTUNE Match is an additional opportunity offered to NEPTUNE study participants that gives information about which clinical trials may be a match for them.
If you are eligible for and choose to participate in NEPTUNE Match, you will also be enrolled in our parent NEPTUNE study where blood, urine, and your clinical information is gathered.
Not sure what clinical studies are or what to expect? Learn more about clinical studies.
We are currently matching to the following partnered clinical trials in NEPTUNE Match:
- 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).
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.
- 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
- 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.
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.
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.