Skip to main content

Advertisement

SpringerLink
Log in

Pediatric contributions and lessons learned from the NEPTUNE cohort study

  • Review
  • Published:
Pediatric Nephrology Aims and scope Submit manuscript

Abstract

Primary glomerular diseases are rare entities. This has hampered efforts to better understand the underlying pathobiology and to develop novel safe and effective therapies. NEPTUNE is a rare disease network that is focused on patients of all ages with minimal change disease, focal segmental glomerulosclerosis, and membranous nephropathy. It is a longitudinal cohort study that collects detailed demographic, clinical, histopathologic, genomic, transcriptomic, and metabolomic data. The goal is to develop a molecular classification for these disorders that supersedes the traditional pathological features-based schema. Pediatric patients are important contributors to this ongoing project. In this review, we provide a snapshot of the children and adolescents enrolled in NEPTUNE and summarize some key observations that have been made based on the data accumulated during the study. In addition, we describe the development of NEPTUNE Match, a program that aims to leverage the multi-scalar information gathered for each individual patient to provide guidance about potential clinical trial participation based on the molecular characterization and non-invasive biomarker profile. This represents the first organized effort to apply principles of precision medicine to the treatment of patients with primary glomerular disease. NEPTUNE has proven to be an invaluable asset in the study of glomerular diseases in patients of all ages including children and adolescents.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3
Fig. 4
Fig. 5

Similar content being viewed by others

Data Availability

Neptune clinical data are available to researchers upon reasonable request to NEPTUNE-STUDY@umich.edu, and will become available through the NIH repository.

References

  1. Ng DK, Pierce CB (2021) Kidney disease progression in children and young adults with pediatric CKD: epidemiologic perspectives and clinical applications. Semin Nephrol 41:405–415. https://doi.org/10.1016/j.semnephrol.2021.09.002

    Article  PubMed  PubMed Central  Google Scholar 

  2. Harada R, Hamasaki Y, Okuda Y, Hamada R, Ishikura K (2022) Epidemiology of pediatric chronic kidney disease/kidney failure: learning from registries and cohort studies. Pediatr Nephrol 37:1215–1229. https://doi.org/10.1007/s00467-021-05145-1

    Article  PubMed  Google Scholar 

  3. Cara-Fuentes G, Smoyer WE (2021) Biomarkers in pediatric glomerulonephritis and nephrotic syndrome. Pediatr Nephrol 36:2659–2673. https://doi.org/10.1007/s00467-020-04867-y

    Article  PubMed  Google Scholar 

  4. Gipson DS, Massengill SF, Yao L, Nagaraj S, Smoyer WE, Mahan JD, Wigfall D, Miles P, Powell L, Lin JJ, Trachtman H, Greenbaum LA (2009) Management of childhood onset nephrotic syndrome. Pediatrics 124:747–757. https://doi.org/10.1542/peds.2008-1559

    Article  PubMed  Google Scholar 

  5. Vivarelli M, Gibson K, Sinha A, Boyer O (2023) Childhood nephrotic syndrome. Lancet 402:809

    Article  PubMed  Google Scholar 

  6. Angeletti A, Bruschi M, Kajana X, La Porta E, Spinelli S, Caridi G, Lugani F, Verrina EE, Ghiggeri GM (2023) Biologics in steroid resistant nephrotic syndrome in childhood: review and new hypothesis-driven treatment. Front Immunol 14:1213203. https://doi.org/10.3389/fimmu.2023.1213203

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  7. Eddy S, Mariani LH, Kretzler M (2020) Integrated multi-omics approaches to improve classification of chronic kidney disease. Nat Rev Nephrol 16:657–668. https://doi.org/10.1038/s41581-020-0286-5

    Article  PubMed  Google Scholar 

  8. Gadegbeku CA, Gipson DS, Holzman LB, Ojo AO, Song PX, Barisoni L, Sampson MG, Kopp JB, Lemley KV, Nelson PJ, Lienczewski CC, Adler SG, Appel GB, Cattran DC, Choi MJ, Contreras G, Dell KM, Fervenza FC, Gibson KL, Greenbaum LA, Hernandez JD, Hewitt SM, Hingorani SR, Hladunewich M, Hogan MC, Hogan SL, Kaskel FJ, Lieske JC, Meyers KE, Nachman PH, Nast CC, Neu AM, Reich HN, Sedor JR, Sethna CB, Trachtman H, Tuttle KR, Zhdanova O, Zilleruelo GE, Kretzler M (2013) Design of the Nephrotic Syndrome Study Network (NEPTUNE) to evaluate primary glomerular nephropathy by a multidisciplinary approach. Kidney Int 83:749–756. https://doi.org/10.1038/ki.2012.428

    Article  PubMed  PubMed Central  Google Scholar 

  9. Mariani LH, Eddy S, Al Akwaa FM, McCown PJ, Harder JL, Nair V, Eichinger F, Martini S, Ademola AD, Boima V, Reich HN, El Saghir J, Godfrey B, Ju W, Tanner EC, Vega-Warner V, Wys NL, Adler SG, Appel GB, Athavale A, Atkinson MA, Bagnasco SM, Barisoni L, Brown E, Cattran DC, Coppock GM, Dell KM, Derebail VK, Fervenza FC, Fornoni A, Gadegbeku CA, Gibson KL, Greenbaum LA, Hingorani SR, Hladunewich MA, Hodgin JB, Hogan MC, Holzman LB, Jefferson JA, Kaskel FJ, Kopp JB, Lafayette RA, Lemley KV, Lieske JC, Lin JJ, Menon R, Meyers KE, Nachman PH, Nast CC, O’Shaughnessy MM, Otto EA, Reidy KJ, Sambandam KK, Sedor JR, Sethna CB, Singer P, Srivastava T, Tran CL, Tuttle KR, Vento SM, Wang CS, Ojo AO, Adu D, Gipson DS, Trachtman H, Kretzler M (2023) Precision nephrology identified tumor necrosis factor activation variability in minimal change disease and focal segmental glomerulosclerosis. Kidney Int 103:565–579. https://doi.org/10.1016/j.kint.2022.10.023

    Article  CAS  PubMed  Google Scholar 

  10. Trautmann A, Boyer O, Hodson E, Bagga A, Gipson DS, Samuel S, Wetzels J, Alhasan K, Banerjee S, Bhimma R, Bonilla-Felix M, Cano F, Christian M, Hahn D, Kang HG, Nakanishi K, Safouh H, Trachtman H, Xu H, Cook W, Vivarelli M, Haffner D; International Pediatric Nephrology Association (2023) IPNA clinical practice recommendations for the diagnosis and management of children with steroid-sensitive nephrotic syndrome. Pediatr Nephrol 38:877–919. https://doi.org/10.1007/s00467-022-05739-3

    Article  PubMed  Google Scholar 

  11. Jayapandian CP, Chen Y, Janowczyk AR, Palmer MB, Cassol CA, Sekulic M, Hodgin JB, Zee J, Hewitt SM, O’Toole J, Toro P, Sedor JR, Barisoni L, Madabhushi A, Nephrotic Syndrome Study Network (NEPTUNE) (2021) Development and evaluation of deep learning-based segmentation of histologic structures in the kidney cortex with multiple histologic stains. Kidney Int 99:86–101. https://doi.org/10.1016/j.kint.2020.07.044

    Article  CAS  PubMed  Google Scholar 

  12. Zee J, Liu Q, Smith AR, Hodgin JB, Rosenberg A, Gillespie BW, Holzman LB, Barisoni L, Mariani LH, Nephrotic Syndrome Study Network (NEPTUNE), NEPTUNE Members (2022) Kidney biopsy features most predictive of clinical outcomes in the spectrum of minimal change disease and focal segmental glomerulosclerosis. J Am Soc Nephrol 33:1411–1426. https://doi.org/10.1681/ASN.2021101396

    Article  PubMed  PubMed Central  Google Scholar 

  13. Debiec H, Dossier C, Letouze E, Gillies CE, Vivarelli M, Putler RK, Ars E, Jacqz-Aigrain E, Elie V, Colucci M, Debette S, Amouyel P, Elalaoui SC, Sefiani A, Dubois V, Simon T, Kretzler M, Ballarin J, Emma F, Sampson MG, Deschenes G, Ronco P (2018) Transethnic, genome-wide analysis reveals immune-related risk alleles and phenotypic correlates in pediatric steroid-sensitive nephrotic syndrome. J Am Soc Nephrol 29:2000–2013. https://doi.org/10.1681/ASN.2017111185

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  14. Gbadegesin RA, Adeyemo A, Webb NJ, Greenbaum LA, Abeyagunawardena A, Thalgahagoda S, Kale A, Gipson D, Srivastava T, Lin JJ, Chand D, Hunley TE, Brophy PD, Bagga A, Sinha A, Rheault MN, Ghali J, Nicholls K, Abraham E, Janjua HS, Omoloja A, Barletta GM, Cai Y, Milford DD, O’Brien C, Awan A, Belostotsky V, Smoyer WE, Homstad A, Hall G, Wu G, Nagaraj S, Wigfall D, Foreman J, Winn MP, Mid-West Pediatric Nephrology Consortium (2015) HLA-DQA1 and PLCG2 are candidate risk loci for childhood-onset steroid-sensitive nephrotic syndrome. J Am Soc Nephrol 26:1701–1710. https://doi.org/10.1681/ASN.2014030247

    Article  CAS  PubMed  Google Scholar 

  15. Jia X, Horinouchi T, Hitomi Y, Shono A, Khor SS, Omae Y, Kojima K, Kawai Y, Nagasaki M, Kaku Y, Okamoto T, Ohwada Y, Ohta K, Okuda Y, Fujimaru R, Hatae K, Kumagai N, Sawanobori E, Nakazato H, Ohtsuka Y, Nakanishi K, Shima Y, Tanaka R, Ashida A, Kamei K, Ishikura K, Nozu K, Tokunaga K, Iijima K, Research Consortium on Genetics of Childhood Idiopathic Nephrotic Syndrome in Japan (2018) Strong association of the HLA-DR/DQ locus with childhood steroid-sensitive nephrotic syndrome in the Japanese population. J Am Soc Nephrol 29:2189–2199. https://doi.org/10.1681/ASN.2017080859

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  16. Gipson DS, Troost JP, Spino C, Attalla S, Tarnoff J, Massengill S, Lafayette R, Vega-Warner V, Adler S, Gipson P, Elliott M, Kaskel F, Fermin D, Moxey-Mims M, Fine RN, Brown EJ, Reidy K, Tuttle K, Gibson K, Lemley KV, Greenbaum LA, Atkinson MA, Hingorani S, Srivastava T, Sethna CB, Meyers K, Tran C, Dell KM, Wang CS, Yee JL, Sampson MG, Gbadegesin R, Lin JJ, Brady T, Rheault M, Trachtman H (2022) Comparing kidney health outcomes in children, adolescents, and adults with focal segmental glomerulosclerosis. JAMA Netw Open 5:e2228701. https://doi.org/10.1001/jamanetworkopen.2022.28701

    Article  PubMed  PubMed Central  Google Scholar 

  17. Gipson DS, Trachtman H, Waldo A, Gibson KL, Eddy S, Dell KM, Srivastava T, Lemley KV, Greenbaum LA, Hingorani S, Meyers KE, Kaskel FJ, Reidy KJ, Sethna CB, Tran CL, Wang CS, Tuttle KR, Oh G, Neu AM, Brown E, Lin JJ, Yee JL, Roth TM, Troost JP, Gillespie BW, Sampson MG, Kretzler M, Ju W (2020) Urinary epidermal growth factor as a marker of disease progression in children with nephrotic syndrome. Kidney Int Rep 5:414–425. https://doi.org/10.1016/j.ekir.2019.11.018

    Article  PubMed  Google Scholar 

  18. Sethna CB, Meyers KEC, Mariani LH, Psoter KJ, Gadegbeku CA, Gibson KL, Srivastava T, Kretzler M, Brady TM (2017) Blood pressure and visit-to-visit blood pressure variability among individuals with primary proteinuric glomerulopathies. Hypertension 70:315–323. https://doi.org/10.1161/HYPERTENSIONAHA.117.09475

    Article  CAS  PubMed  Google Scholar 

  19. Shah PP, Brady TM, Meyers KEC, O’Shaughnessy MM, Gibson KL, Srivastava T, Zee J, Cattran D, Tuttle KR, Gadegbeku C, Glenn D, Derebail V, Smith A, Wang CS, Gillespie BW, Bitzer M, Sethna CB (2021) Association of obesity with cardiovascular risk factors and kidney disease outcomes in primary proteinuric glomerulopathies. Nephron 145:245–255. https://doi.org/10.1159/000513869

    Article  CAS  PubMed  Google Scholar 

  20. Wang L, Smith-Salzberg B, Meyers KE, Glenn DA, Tuttle KR, Derebail VK, Brady TM, Gibson K, Smith AR, O’Shaughnessy MM, Srivastava T, Hall G, Zee J, Bitzer M, Sethna CB (2023) Tobacco exposure in adults and children with proteinuric glomerulopathies: a NEPTUNE cohort study. BMC Nephrol 24:30. https://doi.org/10.1186/s12882-023-03073-w

  21. Sadowski CE, Lovric S, Ashraf S, Pabst WL, Gee HY, Kohl S, Engelmann S, Vega-Warner V, Fang H, Halbritter J, Somers MJ, Tan W, Shril S, Fessi I, Lifton RP, Bockenhauer D, El-Desoky S, Kari JA, Zenker M, Kemper MJ, Mueller D, Fathy HM, Soliman NA, Group SS, Hildebrandt F (2015) A single-gene cause in 29.5% of cases of steroid-resistant nephrotic syndrome. J Am Soc Nephrol 26:1279–1289.https://doi.org/10.1681/ASN.2014050489

  22. Sampson MG, Gillies CE, Robertson CC, Crawford B, Vega-Warner V, Otto EA, Kretzler M, Kang HM (2016) Using population genetics to interrogate the monogenic nephrotic syndrome diagnosis in a case cohort. J Am Soc Nephrol 27:1970–1983. https://doi.org/10.1681/ASN.2015050504

    Article  CAS  PubMed  Google Scholar 

  23. Robertson CC, Gillies CE, Putler RKB, Ng D, Reidy KJ, Crawford B, Sampson MG (2017) An investigation of APOL1 risk genotypes and preterm birth in African American population cohorts. Nephrol Dial Transplant 32:2051–2058. https://doi.org/10.1093/ndt/gfw317

    Article  CAS  PubMed  Google Scholar 

  24. Ng DK, Robertson CC, Woroniecki RP, Limou S, Gillies CE, Reidy KJ, Winkler CA, Hingorani S, Gibson KL, Hjorten R, Sethna CB, Kopp JB, Moxey-Mims M, Furth SL, Warady BA, Kretzler M, Sedor JR, Kaskel FJ, Sampson MG (2017) APOL1-associated glomerular disease among African-American children: a collaboration of the chronic kidney disease in children (CKiD) and nephrotic syndrome study network (NEPTUNE) cohorts. Nephrol Dial Transplant 32:983–990. https://doi.org/10.1093/ndt/gfw061

    Article  PubMed  Google Scholar 

  25. Sampson MG, Robertson CC, Martini S, Mariani LH, Lemley KV, Gillies CE, Otto EA, Kopp JB, Randolph A, Vega-Warner V, Eichinger F, Nair V, Gipson DS, Cattran DC, Johnstone DB, O’Toole JF, Bagnasco SM, Song PX, Barisoni L, Troost JP, Kretzler M, Sedor JR, Nephrotic Syndrome Study Network (2016) integrative genomics identifies novel associations with APOL1 risk genotypes in black NEPTUNE subjects. J Am Soc Nephrol 27:814–823. https://doi.org/10.1681/ASN.2014111131

    Article  CAS  PubMed  Google Scholar 

  26. Beanlands H, Maione M, Poulton C, Herreshoff E, Hladunewich MA, Hailperin M, Modes MM, An L, Nunes JW, Trachtman H, Nachman P, Gipson DS (2017) Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome. Nephrol Dial Transplant 32:i98–i105. https://doi.org/10.1093/ndt/gfw344

    Article  PubMed  PubMed Central  Google Scholar 

  27. Kidney Disease: Improving Global Outcomes Glomerular Diseases Work Group (2021) KDIGO 2021 clinical practice guideline for the management of glomerular diseases. Kidney Int 100:S1–S276. https://doi.org/10.1016/j.kint.2021.05.021

    Article  Google Scholar 

  28. Wang CS, Troost JP, Greenbaum LA, Srivastava T, Reidy K, Gibson K, Trachtman H, Piette JD, Sethna CB, Meyers K, Dell KM, Tran CL, Vento S, Kallem K, Herreshoff E, Hingorani S, Lemley K, Oh G, Brown E, Lin JJ, Kaskel F, Gipson DS (2019) Text messaging for disease monitoring in childhood nephrotic syndrome. Kidney Int Rep 4:1066–1074. https://doi.org/10.1016/j.ekir.2019.04.026

    Article  PubMed  PubMed Central  Google Scholar 

  29. Thakoordeen-Reddy S, Winkler C, Moodley J, David V, Binns-Roemer E, Ramsuran V, Naicker T (2020) Maternal variants within the apolipoprotein L1 gene are associated with preeclampsia in a South African cohort of African ancestry. Eur J Obstet Gynecol Reprod Biol 246:129–133. https://doi.org/10.1016/j.ejogrb.2020.01.034

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. Hong X, Rosenberg AZ, Zhang B, Binns-Roemer E, David V, Lv Y, Hjorten RC, Reidy KJ, Chen TK, Wang G, Ji Y, Simpson CL, Davis RL, Kopp JB, Wang X, Winkler CA (2021) Joint associations of maternal-fetal APOL1 genotypes and maternal country of origin with preeclampsia risk. Am J Kidney Dis 77:e871. https://doi.org/10.1053/j.ajkd.2020.10.020

    Article  CAS  Google Scholar 

  31. Trachtman H, Desmond H, Williams A, Mariani LH, Eddy S, Ju W, Barisoni L, Ascani HK, Uhlmann WR, Spino C, Holzman LB, Sedor JR, Gadegbeku C, Subramanian L, Lienczewski C, Manieri T, Roberts SJ, Gipson DS, Kretzler M, for the NEPTUNE investigators (2023) Rationale and design of The Nephrotic Syndrome Network (NEPTUNE) Match in glomerular diseases: Designing the right trial for the right patient, today. Kidney international (in press)

Download references

Acknowledgements

The authors wish to thank Hannah Strum for her help in compiling the data from studies conducted in NEPTUNE and Lalita Subramanian for her expert assistance in the preparation of the manuscript.

Members of the Nephrotic Syndrome Study Network (NEPTUNE)

NEPTUNE collaborating sites

Atrium Health Levine Children’s Hospital, Charlotte, SC: Susan Massengill*, Layla Lo#

Cleveland Clinic, Cleveland, OH: Katherine Dell*, John O’Toole*, John Sedor**, Blair Martin#

Children’s Hospital, Los Angeles, CA: Ian Macumber*, Silpa Sharma#

Children’s Mercy Hospital, Kansas City, MO: Tarak Srivastava*, Kelsey Markus#

Cohen Children’s Hospital, New Hyde Park, NY: Christine Sethna*, Suzanne Vento#

Columbia University, New York, NY: Pietro Canetta*

Duke University Medical Center, Durham, NC: Opeyemi Olabisi*, Rasheed Gbadegesin**, Maurice Smith#

Emory University, Atlanta, GA: Laurence Greenbaum*, Chia-shi Wang*, Emily Yun#

The Lundquist Institute, Torrance, CA: Sharon Adler*, Janine LaPage#

John H Stroger Cook County Hospital, Chicago, IL: Amatur Amarah*, Mathew Itteera#

Johns Hopkins Medicine, Baltimore, MD: Meredith Atkinson*, Miahje Williams#

Mayo Clinic, Rochester, MN: John Lieske, Marie Hogan, Fernando Fervenza.

Medical University of South Carolina, Charleston, SC: David Selewski*, Cheryl Alston#

Montefiore Medical Center, Bronx, NY: Kim Reidy*, Michael Ross*, Frederick Kaskel**, Patricia Flynn#

New York University Medical Center, New York, NY: Laura Malaga-Dieguez*, Olga Zhdanova**, Laura Jane Pehrson#, Melanie Miranda#

The Ohio State University College of Medicine, Columbus, OH: Salem Almaani*, Laci Roberts#

Stanford University, Stanford, CA: Richard Lafayette*, Shiktij Dave#

Temple University, Philadelphia, PA: Iris Lee**

Texas Children’s Hospital at Baylor College of Medicine, Houston, TX: Shweta Shah*, Sadaf Batla# #

University Health Network Toronto: Heather Reich*, Michelle Hladunewich**, Paul Ling#, Martin Romano#

University of California at San Francisco, San Francisco, CA: Paul Brakeman*

University of Colorado Anschutz Medical Campus, Aurora, CO: James Dylewski* Nathan Rogers#

University of Kansas Medical Center, Kansas City, KS: Ellen McCarthy*, Catherine Creed#

University of Miami, Miami, FL: Alessia Fornoni*, Miguel Bandes#

University of Michigan, Ann Arbor, MI: Matthias Kretzler*, Laura Mariani*, Zubin Modi*, A Williams#, Roxy Ni#

University of Minnesota, Minneapolis, MN: Patrick Nachman*, Michelle Rheault*, Amy Kowalski#, Nicolas Rauwolf#

University of North Carolina, Chapel Hill, NC: Vimal Derebail*, Keisha Gibson*, Anne Froment#, Sara Kelley#

University of Pennsylvania, Philadelphia, PA: Lawrence Holzman*, Kevin Meyers**, Krishna Kallem#, Aliya Edwards#

University of Texas San Antonio, San Antonio, TX: Samin Sharma**

University of Texas Southwestern, Dallas, TX: Elizabeth Roehm*, Kamalanathan Sambandam**, Elizabeth Brown**, Jamie Hellewege.

University of Washington, Seattle, WA: Ashley Jefferson*, Sangeeta Hingorani**, Katherine Tuttle**§, Linda Manahan#, Emily Pao#, Kelli Kuykendall§

Wake Forest University Baptist Health, Winston-Salem, NC: Jen Jar Lin**

Washington University in St. Louis, St. Louis, MO: Vikas Dharnidharka*

Data analysis and coordinating center

University of Michigan: Matthias Kretzler*, Brenda Gillespie**, Laura Mariani**, Zubin Modi**, Eloise Salmon**, Howard Trachtman**, Tina Mainieri, Gabrielle Alter, Michael Arbit, Hailey Desmond, Sean Eddy, Damian Fermin, Wenjun Ju, Maria Larkina, Chrysta Lienczewski, Rebecca Scherr, Jonathan Troost, Amanda Williams, Yan Zhai; Arbor Collaborative for Health: Colleen Kincaid, Shengqian Li, Shannon Li; Cleveland Clinic: Crystal Gadegbeku**; Duke University: Laura Barisoni**, John Sedor**; Harvard University: Matthew G Sampson**; Northwestern University: Abigail Smith**; University of Pennsylvania: Lawrence Holzman**, Jarcy Zee**

Digital pathology committee

Carmen Avila-Casado (University Health Network), Serena Bagnasco (Johns Hopkins University), Lihong Bu (Mayo Clinic), Shelley Caltharp (Emory University), Clarissa Cassol (Arkana), Dawit Demeke (University of Michigan), Brenda Gillespie (University of Michigan), Jared Hassler (Temple University), Leal Herlitz (Cleveland Clinic), Stephen Hewitt (National Cancer Institute), Jeff Hodgin (University of Michigan), Danni Holanda (Arkana), Neeraja Kambham (Stanford University), Kevin Lemley, Laura Mariani (University of Michigan), Nidia Messias (Washington University), Alexei Mikhailov (Wake Forest), Vanessa Moreno (University of North Carolina), Behzad Najafian (University of Washington), Matthew Palmer (University of Pennsylvania), Avi Rosenberg (Johns Hopkins University), Virginie Royal (University of Montreal), Miroslav Sekulik (Columbia University), Barry Stokes (Columbia University), David Thomas (Duke University), Ming Wu (University of New York), Michifumi Yamashita (Cedar Sinai), Hong Yin (Emory University), Jarcy Zee (University of Pennsylvania), Yiqin Zuo (University of Miami). Co-Chairs: Laura Barisoni (Duke University), Cynthia Nast (Cedar Sinai).*Principal Investigator; **Co-investigator; #Study Coordinator; §Providence Medical Research Center, Spokane, WA

Funding

The Nephrotic Syndrome Study Network (NEPTUNE) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). NEPTUNE is funded under grant number U54DK083912 as a collaboration between NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Additional funding and/or programmatic support is provided by the University of Michigan, NephCure Kidney International, Alport Syndrome Foundation, and the Halpin Foundation. RDCRN consortia are supported by the RDCRN Data Management and Coordinating Center (DMCC), funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under U2CTR002818. MGS is supported by NIH R01DK119380, 2U54DK083912, RC2DK122397, and the Pura Vida Kidney Foundation.

Author information

Authors and Affiliations

  1. Division of Pediatric Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA

    Zubin J. Modi, Yan Zhai, Jennifer Yee, Hailey Desmond, Debbie S. Gipson & Howard Trachtman

  2. Susan B. Meister Child Health Research and Evaluation Center, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA

    Zubin J. Modi

  3. Department of Biostatistics, University of Michigan, Ann Arbor, MI, USA

    Wei Hao

  4. Division of Pediatric Nephrology, Boston Children’s Hospital, Boston, MA, USA

    Matthew G. Sampson

  5. Harvard Medical School, Boston, MA, USA

    Matthew G. Sampson

  6. Kidney Disease Initiative and Medical Population Genetics Groups, Broad Institute, Cambridge, MA, USA

    Matthew G. Sampson

  7. Division of Kidney Medicine, Brigham and Women’s Hospital, Boston, MA, USA

    Matthew G. Sampson

  8. Cohen Children’s Medical Center, New Hyde Park, NY, USA

    Christine B. Sethna

  9. Emory University School of Medicine and Children’s Healthcare of Atlanta, Atlanta, GA, USA

    Chia-shi Wang

  10. Department of Internal Medicine, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA

    Matthias Kretzler

  11. Department of Computational Medicine and Bioinformatics, University of Michigan, Ann Arbor, MI, USA

    Matthias Kretzler

Authors
  1. Zubin J. Modi
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Yan Zhai
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jennifer Yee
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Hailey Desmond
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Wei Hao
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Matthew G. Sampson
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Christine B. Sethna
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Chia-shi Wang
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Debbie S. Gipson
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Howard Trachtman
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Matthias Kretzler
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

for the NEPTUNE investigators

  • Susan Massengill
  • , Layla Lo
  • , Katherine Dell
  • , John O’Toole
  • , John Sedor
  • , Blair Martin
  • , Ian Macumber
  • , Silpa Sharma
  • , Tarak Srivastava
  • , Kelsey Markus
  • , Suzanne Vento
  • , Pietro Canetta
  • , Opeyemi Olabisi
  • , Rasheed Gbadegesin
  • , Maurice Smith
  • , Laurence Greenbaum
  • , Emily Yun
  • , Sharon Adler
  • , Janine LaPage
  • , Amatur Amarah
  • , Mathew Itteera
  • , Meredith Atkinson
  • , Miahje Williams
  • , John Lieske
  • , Marie Hogan
  • , Fernando Fervenza
  • , David Selewski
  • , Cheryl Alston
  • , Kim Reidy
  • , Michael Ross
  • , Frederick Kaskel
  • , Patricia Flynn
  • , Laura Malaga-Dieguez
  • , Olga Zhdanova
  • , Laura Jane Pehrson
  • , Melanie Miranda
  • , Salem Almaani
  • , Laci Roberts
  • , Richard Lafayette
  • , Shiktij Dave
  • , Iris Lee
  • , Shweta Shah
  • , Sadaf Batla
  • , Heather Reich
  • , Michelle Hladunewich
  • , Paul Ling
  • , Martin Romano
  • , Paul Brakeman
  • , James Dylewski
  • , Nathan Rogers
  • , Ellen McCarthy
  • , Catherine Creed
  • , Alessia Fornoni
  • , Miguel Bandes
  • , Laura Mariani
  • , A. Williams
  • , Roxy Ni
  • , Patrick Nachman
  • , Michelle Rheault
  • , Amy Kowalski
  • , Nicolas Rauwolf
  • , Vimal Derebail
  • , Keisha Gibson
  • , Anne Froment
  • , Sara Kelley
  • , Lawrence Holzman
  • , Kevin Meyers
  • , Krishna Kallem
  • , Aliya Edwards
  • , Samin Sharma
  • , Elizabeth Roehm
  • , Kamalanathan Sambandam
  • , Elizabeth Brown
  • , Jamie Hellewege
  • , Ashley Jefferson
  • , Sangeeta Hingorani
  • , Katherine Tuttle
  • , Linda Manahan
  • , Emily Pao
  • , Kelli Kuykendall
  • , Jen Jar Lin
  • , Vikas Dharnidharka
  • , Brenda Gillespie
  • , Eloise Salmon
  • , Tina Mainieri
  • , Gabrielle Alter
  • , Michael Arbit
  • , Sean Eddy
  • , Damian Fermin
  • , Wenjun Ju
  • , Maria Larkina
  • , Chrysta Lienczewski
  • , Rebecca Scherr
  • , Jonathan Troost
  • , Amanda Williams
  • , Colleen Kincaid
  • , Shengqian Li
  • , Shannon Li
  • , Crystal Gadegbeku
  • , Laura Barisoni
  • , Abigail Smith
  • , Jarcy Zee
  • , Carmen Avila-Casado
  • , Serena Bagnasco
  • , Lihong Bu
  • , Shelley Caltharp
  • , Clarissa Cassol
  • , Dawit Demeke
  • , Jared Hassler
  • , Leal Herlitz
  • , Stephen Hewitt
  • , Jeff Hodgin
  • , Danni Holanda
  • , Neeraja Kambham
  • , Kevin Lemley
  • , Nidia Messias
  • , Alexei Mikhailov
  • , Vanessa Moreno
  • , Behzad Najafian
  • , Matthew Palmer
  • , Avi Rosenberg
  • , Virginie Royal
  • , Miroslav Sekulik
  • , Barry Stokes
  • , David Thomas
  • , Ming Wu
  • , Michifumi Yamashita
  • , Hong Yin
  • , Yiqin Zuo
  •  & Cynthia Nast

Corresponding author

Correspondence to Howard Trachtman.

Ethics declarations

Conflict of interest

Dr. Modi reports research funding outside of this work from the National Institutes of Health, Centers for Disease Control, the Patient-Centered Outcomes Research Institute, Travere Therapeutics, and Boehringer Ingelheim. He is also the current director of the Kidney Research Network Coordinating Center. Dr. Sampson is on the scientific advisory board of Natera. Dr Wang received research support from the National Institute of Diabetes and Digestive and Kidney Diseases, the Centers for Disease Control and Prevention, NephCure Kidney International (NKI), the European Society of Pediatric Nephrology—Pediatric Nephrology Research Consortium, Boehringer-Ingelheim, IQVIA, and Genentech outside the submitted work. Dr. Gipson reports past research funding from National Institutes of Health, Centers for Disease Control, US Food and Drug Administration, Travere Therapeutics, Reata, Novartis, and Boehringer Ingelheim; past consulting fees paid to the University of Michigan form Roche/Genentech and Vertex; past participation in Data Safety Monitoring Board for National Institutes of Health; past director of Kidney Research Network Coordinating Center; and unpaid project co-lead of the National Kidney Foundation improving vaccination in the kidney disease community project, past co-lead of the Kidney Health Initiative Pediatric IgA nephropathy project, past member of the Kidney Health Initiative FSGS outcomes project, and past planning committee member for the NephCure and Kidney Health Initiative sponsored workshop entitled Pathways to SGLT2i for renoprotection in pediatric CKD. Dr. Trachtman reports employment with RenalStrategies LLC. He has active consultancy agreements with Aclipse, Angion, Goldfinch Bio, Maze Therapeutics, Natera (RenaSight), Otsuka (DSMB Chair for Pediatric Trials), Travere Therapeutics, Inc., Boehringer-Ingelheim, PhaseV and Walden; honoraria for participation in glomerular disease panels organized by Astellas and Reata; Steering Committee and Scientific Advisory Board for DUPRO (DUPLEX and POTECT Trials) for Travere Therapeutics, Inc.; member of the Kidney Health Initiative Board of Directors; Editorial board member of Pediatric Nephology, Glomerular Diseases, and Kidney360; serves as a partner with NephCure Kidney International in efforts to promote pediatric participation in clinical trials for glomerular diseases (PIONEER). Dr. Kretzler reports grants from NIH, non-financial support from University of Michigan, funding through the University of Michigan from Goldfinch Bio, Boehringer-Ingelheim, Certa, Travere and Maze therapeutics, as well as grants and contracts outside the submitted work through the University of Michigan with NIH, Chan Zuckerberg Initiative, JDRF, Roche, Astra-Zeneca, NovoNordisk, Moderna, European Union Innovative Medicine, Chinook, Angion Pharmaceuticals, RenalytixAI, Eli Lilly, Gilead, Regeneron, IONIS, and Janssen; consulting fees through the University of Michigan from Astellas, Poxel, Janssen, NovoNordisc; and serves on the NIH-NCATS council and the NephCure Kidney International Board. In addition, Dr. Kretzler has a patent PCT/EP2014/073413 “Biomarkers and methods for progression prediction for chronic kidney disease” licensed. All other authors have no disclosures to report.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Matthias Kretzler is the senior author.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Modi, Z.J., Zhai, Y., Yee, J. et al. Pediatric contributions and lessons learned from the NEPTUNE cohort study. Pediatr Nephrol (2024). https://doi.org/10.1007/s00467-023-06256-7

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s00467-023-06256-7

Keywords

Search

Navigation