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PubMed This is a summary of 19 peer-reviewed journal articles Updated
Nephrology

Building Your Care Team and Preparing for Visits

At a Glance

Because primary MPGN and C3G are rare, a specialized care team is essential. Patients should seek a glomerular disease specialist, request their original biopsy slides for expert review, and track their lab trends over time to ensure the best possible care and access to new treatments.

Because primary MPGN and C3G are rare and complex, the quality of your care depends heavily on the expertise of your medical team. These conditions are not “standard” kidney diseases; they require a deep understanding of the complement system and the ability to access specialized testing and new, targeted therapies [1][2].

Why You Need a Specialist

While a general nephrologist is skilled in managing common issues like high blood pressure or diabetic kidney disease, a glomerular disease specialist focuses specifically on diseases of the kidney’s filters (glomeruli). This specialist is more likely to be familiar with the modern classification of MPGN, the nuances of your biopsy report, and the latest FDA-approved treatments [3][4].

Building Your Multidisciplinary Team

Your care should not happen in a vacuum. A “complete” care team for MPGN or C3G often includes several specialists working together [5][6]:

  • Glomerulonephritis (GN) Specialist: The “quarterback” of your team who oversees your kidney treatment and medications [3].
  • Hematologist: Essential if your doctor suspects MGRS (Monoclonal Gammopathy of Renal Significance). They target the source of the abnormal proteins in your bone marrow [7][8].
  • Renal Pathologist: A specialized doctor who reads your kidney biopsy. Having your slides re-reviewed by an expert at an academic center can sometimes change or refine your diagnosis [9][10].
  • Renal Dietitian: Helps you manage your protein intake, salt, and fluid balance, which is critical for controlling swelling (edema) and high blood pressure [11][12].
  • Ophthalmologist: Some forms of C3G can cause small deposits in the back of the eye called drusen. A baseline eye exam is often recommended [5][13].

Preparing for a Referral or Second Opinion

When you visit a specialist or seek a second opinion at a major academic center, you must be your own best advocate. Bringing the right “artifacts” ensures the new doctor has everything they need to evaluate your case from scratch [9][14]:

  • The Original Biopsy Slides: Do not just bring the paper report. Request the actual glass slides (or high-resolution digital versions) from the hospital where the biopsy was performed. A specialist will want their own pathologist to look at them [9][15].
  • Lab Flowsheets: Instead of individual lab printouts, try to create a spreadsheet that shows your eGFR, proteinuria (UPCR), and C3/C4 complement levels over time. This shows the “trend” of your disease [16].
  • Genetic Testing Reports: If you have had any genetic testing for complement mutations, bring the full multi-page report [14][17].
  • Medication History: A list of every medication you have tried for your kidneys, including how long you took it and whether it helped reduce your protein levels [4].

Vetting Your Doctor

It is okay to ask your doctor about their experience. A knowledgeable specialist will welcome these questions. Ask if they participate in clinical trials, if they have experience with the new proximal complement inhibitors (like Iptacopan or Pegcetacoplan), and how they stay updated on the rapidly changing guidelines for these rare diseases [4][18][19].

Return to Home

Common questions in this guide

Why do I need a specialist for primary MPGN or C3G?
Because primary MPGN and C3G are rare kidney diseases, they require specialized knowledge of the complement system. A glomerular disease specialist is much more familiar with complex biopsy reports and the newest targeted therapies than a general nephrologist.
What specialists should be on my MPGN care team?
Your team should ideally include a glomerulonephritis specialist, a renal pathologist, and a renal dietitian. Depending on your specific condition, you may also need a hematologist if abnormal proteins are found, and an ophthalmologist to check for eye deposits.
What should I bring to a second opinion for C3G?
You should bring the actual glass slides or high-resolution digital versions of your kidney biopsy, not just the paper report. Also bring a flowsheet of your lab results over time, any genetic testing reports, and a complete medication history.
How should I track my lab results for my kidney specialist?
Create a spreadsheet showing trends in your eGFR, proteinuria, and C3 and C4 complement levels over time. This helps your doctor see the overall progression of your disease rather than just isolated lab values.
What questions should I ask a new kidney specialist?
Ask how many patients with C3G or primary MPGN they currently treat, if they work with a specialized renal pathologist, and if they participate in clinical trials for new complement-inhibiting medications.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with C3G or primary MPGN do you currently treat?
  2. 2.Does this center have a specialized 'glomerular disease' clinic or a multidisciplinary team for rare kidney diseases?
  3. 3.Do you work directly with a renal pathologist who has experience with 'unmasking' hidden proteins in biopsy samples?
  4. 4.If my biopsy suggests MGRS, which hematologist do you collaborate with to manage the underlying clone?
  5. 5.Are you currently participating in any clinical trials for the new complement-inhibiting medications?

Questions For You

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References

References (19)
  1. 1

    Diagnostic Challenges and Emerging Pathogeneses of Selected Glomerulopathies.

    Andeen NK, Hou J

    Pediatric and developmental pathology : the official journal of the Society for Pediatric Pathology and the Paediatric Pathology Society 2024; (27(5)):387-410 doi:10.1177/10935266241237656.

    PMID: 38576387
  2. 2

    Mycophenolate Mofetil Treatment of C3 Glomerulopathy.

    Peleg Y, Appel GB

    Clinical journal of the American Society of Nephrology : CJASN 2020; (15(9)):1234-1236 doi:10.2215/CJN.11740720.

    PMID: 32841154
  3. 3

    A clinical approach to children with C3 glomerulopathy.

    Vivarelli M, van de Kar N, Labbadia R, et al.

    Pediatric nephrology (Berlin, Germany) 2022; (37(3)):521-535 doi:10.1007/s00467-021-05088-7.

    PMID: 34002292
  4. 4

    [What is proven in the treatment of complement-mediated kidney diseases?]

    Kaufeld J, Lovric S

    Innere Medizin (Heidelberg, Germany) 2024; (65(12)):1216-1224 doi:10.1007/s00108-024-01812-1.

    PMID: 39557672
  5. 5

    The Retinal Complications of C3 Dense Deposit Disease: A Scoping Review.

    McCarney J, Curran K, Peto T, et al.

    Vision (Basel, Switzerland) 2025; (9(3)) doi:10.3390/vision9030064.

    PMID: 40843788
  6. 6

    Association of monoclonal gammopathy of undetermined significance and C3 glomerulopathy.

    Ekladious A, Bhandari R, Javaid MM

    Internal medicine journal 2023; (53(9)):1712-1715 doi:10.1111/imj.16222.

    PMID: 37665716
  7. 7

    Successful Renal Outcome in Membranoproliferative Glomerulonephritis Following Treatment of the Underlying Subtle Clone: A Case Report.

    Rana R, Cockwell P, Vydianath B, et al.

    Mayo Clinic proceedings. Innovations, quality & outcomes 2018; (2(3)):297-302 doi:10.1016/j.mayocpiqo.2018.04.003.

    PMID: 30225464
  8. 8

    [Monoclonal gammopathy of renal significance and membranoproliferative glomerulonephritis: a complex relationship with promising therapeutic opportunities].

    Manes M, Radin E, Pellu' V, et al.

    Giornale italiano di nefrologia : organo ufficiale della Societa italiana di nefrologia 2019; (36(4)).

    PMID: 31373468
  9. 9

    C3 glomerulopathy - understanding a rare complement-driven renal disease.

    Smith RJH, Appel GB, Blom AM, et al.

    Nature reviews. Nephrology 2019; (15(3)):129-143 doi:10.1038/s41581-018-0107-2.

    PMID: 30692664
  10. 10

    The Complexity and Heterogeneity of Monoclonal Immunoglobulin-Associated Renal Diseases.

    Sethi S, Rajkumar SV, D'Agati VD

    Journal of the American Society of Nephrology : JASN 2018; (29(7)):1810-1823 doi:10.1681/ASN.2017121319.

    PMID: 29703839
  11. 11

    Delphi Consensus on Surrogate End Points in C3 Glomerulopathy and Primary Immune Complex-Mediated Membranoproliferative Glomerulonephritis.

    Caravaca-Fontán F, Fakhouri F, Licht C, et al.

    Kidney international reports 2026; (11(2)):103671 doi:10.1016/j.ekir.2025.10.028.

    PMID: 41502799
  12. 12

    Clinical and Histologic Predictors of Kidney Outcomes in C3 Glomerulopathy and Idiopathic Membranoproliferative GN.

    Ghaddar M, Caravaca-Fontán F, Praga M, et al.

    Clinical journal of the American Society of Nephrology : CJASN 2025; (20(8)):1119-1131 doi:10.2215/CJN.0000000751.

    PMID: 40512548
  13. 13

    Cardiac Tamponade-Associated Dense Deposit Disease: A Case Report and Review of the Literature.

    Al Zabali SM, Rubaihan AK, Alnetaifat MF, et al.

    Cureus 2022; (14(9)):e29280 doi:10.7759/cureus.29280.

    PMID: 36277520
  14. 14

    Genetic diagnosis of kidney disease by whole exome sequencing and its clinical application.

    Jung J, Lee JH, Seo GH, et al.

    Clinical genetics 2023; (104(3)):298-312 doi:10.1111/cge.14382.

    PMID: 37270787
  15. 15

    Vision transformer introduces a new vitality to the classification of renal pathology.

    Zhang J, Lu JD, Chen B, et al.

    BMC nephrology 2024; (25(1)):337 doi:10.1186/s12882-024-03800-x.

    PMID: 39385124
  16. 16

    Rare kidney disease registries: A scoping review on characteristics and lessons learnt.

    Mahdian SZ, Hooman N, Sheikhtaheri A

    Health information management : journal of the Health Information Management Association of Australia 2026; (55(1)):25-42 doi:10.1177/18333583251357802.

    PMID: 40847741
  17. 17

    Ultra-rare renal diseases diagnosed with whole-exome sequencing: Utility in diagnosis and management.

    Jung J, Lee JH, Park YS, et al.

    BMC medical genomics 2021; (14(1)):177 doi:10.1186/s12920-021-01026-6.

    PMID: 34217267
  18. 18

    Primary membranoproliferative glomerulonephritis: natural history, pathogenesis, and treatment.

    Filippone EJ, Farber JL

    Frontiers in nephrology 2026; (6()):1747678 doi:10.3389/fneph.2026.1747678.

    PMID: 41767602
  19. 19

    Updates on C3 Glomerulopathy in Kidney Transplantation: Pathogenesis and Treatment Options.

    Bartoli G, Dello Strologo A, Grandaliano G, Pesce F

    International journal of molecular sciences 2024; (25(12)) doi:10.3390/ijms25126508.

    PMID: 38928213

This guide on building a care team for MPGN and C3G is for informational purposes only. Always consult your healthcare provider or a glomerular disease specialist for personalized medical advice.

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