{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T20:32:03Z","timestamp":1786480323364,"version":"build-2736575974"},"reference-count":35,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"3","license":[{"start":{"date-parts":[[2025,12,8]],"date-time":"2025-12-08T00:00:00Z","timestamp":1765152000000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":["Kidney360"],"published-print":{"date-parts":[[2026,3]]},"abstract":"<jats:sec>\n                    <jats:title>Key Points<\/jats:title>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>C3 glomerulopathy and primary immune complex-mediated membranoproliferative GN lead to a significant clinical, economic, and health care burden among affected patients and their families.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>C3 glomerulopathy and primary immune complex-mediated membranoproliferative GN drive high costs for health systems (health care professional visits, tests, dialysis) and patients (lost work capacity, caregiver needs).<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Patients face high daily burden, where fatigue is common and most doctors report a major effect on patient lives.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>C3 glomerulopathy (C3G) and primary immune complex-mediated membranoproliferative GN (IC-MPGN) are rare, progressive kidney disorders affecting both children and adults. This real-world study aimed to assess the clinical, economic, and humanistic burden of these conditions in Europe and the United States, addressing key evidence gaps.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A large, multinational, cross-sectional survey gathered data from treating health care professionals and patients during routine clinical care. Both groups completed surveys reflecting their experiences with C3G or primary IC-MPGN.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In C3G 93 physicians returned data for 289 patients, and 52 patients completed a survey themselves, and for primary IC-MPGN 61 physicians returned data for 215 patients, and 54 patients completed a survey themselves. Baseline clinical characteristics and comorbidity rates were similar across both groups. At the time of survey, 81% (C3G) and 89% (primary IC-MPGN) of patients had stable or improving disease. Average 24-hour proteinuria levels were 2.3 g\/24 hours (C3G) and 1.6 g\/24 hours (IC-MPGN). Proteinuria was the most commonly reported symptom by physicians (69% and 56%), while fatigue or low energy was most frequently reported by patients (50% and 53%). Overall, patient-reported Functional Assessment of Chronic Illness Therapy Fatigue score was 34.7 (C3G) and 34.9 (primary IC-MPGN), on a scale of 0\u201352 where a higher score indicates better quality of life. On average, patients saw a physician 12.3 (C3G) and 10.7 (IC-MPGN) times in the past year, relating to their C3G\/IC-MPGN. Among adults, 42% (C3G) and 31% (IC-MPGN) were not employed full-time. Caregiver support was reported in 15% (C3G) and 25% (IC-MPGN) of cases.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Despite slowly progressing disease in the current cohort, C3G and primary IC-MPGN create a significant clinical, economic, and health care burden among affected patients and their families.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.34067\/kid.0000001059","type":"journal-article","created":{"date-parts":[[2025,12,8]],"date-time":"2025-12-08T17:00:30Z","timestamp":1765213230000},"page":"547-559","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":0,"title":["Real-World Patient Characteristics, Burden, and Quality of Life in C3 Glomerulopathy and Primary Immune Complex Membranoproliferative GN"],"prefix":"10.34067","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5830-9663","authenticated-orcid":false,"given":"Fernando","family":"Caravaca-Fontan","sequence":"first","affiliation":[{"name":"Department of Nephrology, Instituto de Investigaci\u00f3n Hospital 12 de Octubre (imas12), Madrid, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9912-4959","authenticated-orcid":false,"given":"Sayna","family":"Norouzi","sequence":"additional","affiliation":[{"name":"Loma Linda University Medical Center, Loma Linda, California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4574-2385","authenticated-orcid":false,"given":"Mingyi","family":"Huang","sequence":"additional","affiliation":[{"name":"Apellis Pharmaceuticals, Waltham, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3366-9619","authenticated-orcid":false,"given":"Kathryn","family":"Gordon","sequence":"additional","affiliation":[{"name":"Apellis Pharmaceuticals, Waltham, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9372-7174","authenticated-orcid":false,"given":"Sarah","family":"Clayton","sequence":"additional","affiliation":[{"name":"Adelphi Real World, Bollington, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-5480-0591","authenticated-orcid":false,"given":"Mollie","family":"Lowe","sequence":"additional","affiliation":[{"name":"Adelphi Real World, Bollington, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-4423-176X","authenticated-orcid":false,"given":"Kristie","family":"Fitzmaurice","sequence":"additional","affiliation":[{"name":"Adelphi Real World, Bollington, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5470-1329","authenticated-orcid":false,"given":"Chloe","family":"Middleton-Dalby","sequence":"additional","affiliation":[{"name":"Adelphi Real World, Bollington, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1897-3535","authenticated-orcid":false,"given":"Lucia","family":"Quintana-Gallardo","sequence":"additional","affiliation":[{"name":"Swedish Orphan Biovitrum, Stockholm, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4717-5855","authenticated-orcid":false,"given":"Carly","family":"Rich","sequence":"additional","affiliation":[{"name":"Swedish Orphan Biovitrum, Stockholm, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2025,12,8]]},"reference":[{"issue":"3","key":"B2-20260330","doi-asserted-by":"crossref","first-page":"129","DOI":"10.1038\/s41581-018-0107-2","article-title":"C3 glomerulopathy - understanding a rare complement-driven renal disease","volume":"15","author":"Smith","year":"2019","journal-title":"Nat Rev Nephrol."},{"issue":"8","key":"B3-20260330","doi-asserted-by":"crossref","first-page":"494","DOI":"10.1038\/nrneph.2010.85","article-title":"C3 glomerulopathy: a new classification","volume":"6","author":"Fakhouri","year":"2010","journal-title":"Nat Rev Nephrol."},{"issue":"2","key":"B4-20260330","doi-asserted-by":"crossref","first-page":"365","DOI":"10.1681\/ASN.2019040433","article-title":"Large-scale whole-genome sequencing reveals the genetic architecture of primary membranoproliferative GN and C3 glomerulopathy","volume":"31","author":"Levine","year":"2020","journal-title":"J Am Soc Nephrol."},{"issue":"7","key":"B5-20260330","doi-asserted-by":"crossref","first-page":"453","DOI":"10.1038\/s41577-022-00816-y","article-title":"Glomerulonephritis: immunopathogenesis and immunotherapy","volume":"23","author":"Anders","year":"2023","journal-title":"Nat Rev Immunol."},{"issue":"4","key":"B6-20260330","doi-asserted-by":"crossref","first-page":"977","DOI":"10.1016\/j.kint.2017.10.022","article-title":"C3 glomerulonephritis and dense deposit disease share a similar disease course in a large United States cohort of patients with C3 glomerulopathy","volume":"93","author":"Bomback","year":"2018","journal-title":"Kidney Int."},{"issue":"6","key":"B7-20260330","doi-asserted-by":"crossref","first-page":"272","DOI":"10.1159\/000507254","article-title":"Update on C3 glomerulopathy: a complement-mediated disease","volume":"144","author":"Caravaca-Font\u00e1n","year":"2020","journal-title":"Nephron."},{"issue":"2","key":"B8-20260330","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1093\/ndt\/gfab281","article-title":"Membranoproliferative glomerulonephritis: no longer the same disease and may need very different treatment","volume":"38","author":"Noris","year":"2023","journal-title":"Nephrol Dial Transplant."},{"issue":"3","key":"B9-20260330","doi-asserted-by":"crossref","first-page":"344","DOI":"10.1002\/ajmg.c.31986","article-title":"C3 glomerulopathy: understanding an ultra-rare complement-mediated renal disease","volume":"190","author":"Heiderscheit","year":"2022","journal-title":"Am J Med Genet C Semin Med Genet."},{"key":"B11-20260330","article-title":"Quantifying association of early proteinuria and eGFR changes with long-term kidney failure hazard in C3G and IC-MPGN","author":"Masoud","year":"2024","journal-title":"medRxiv."},{"issue":"2","key":"B12-20260330","doi-asserted-by":"crossref","first-page":"632","DOI":"10.1681\/ASN.2016020126","article-title":"Kidney transplantation outcomes across GN subtypes in the United States","volume":"28","author":"O'Shaughnessy","year":"2017","journal-title":"J Am Soc Nephrol."},{"issue":"8","key":"B13-20260330","doi-asserted-by":"crossref","first-page":"1005","DOI":"10.2215\/CJN.0000000000000474","article-title":"C3 glomerulopathy recurs early after kidney transplantation in serial biopsies performed within the first 2 years after transplantation","volume":"19","author":"Tarrag\u00f3n","year":"2024","journal-title":"Clin J Am Soc Nephrol."},{"issue":"1","key":"B14-20260330","doi-asserted-by":"crossref","first-page":"417","DOI":"10.1186\/s12882-019-1605-6","article-title":"Long-term outcomes of patients with end-stage kidney disease due to membranoproliferative glomerulonephritis: an ANZDATA registry study","volume":"20","author":"Wilson","year":"2019","journal-title":"BMC Nephrol."},{"issue":"12","key":"B15-20260330","doi-asserted-by":"crossref","first-page":"2243","DOI":"10.1007\/s00467-012-2249-y","article-title":"Trends in pediatric primary membranoproliferative glomerulonephritis costs and complications","volume":"27","author":"Wei","year":"2012","journal-title":"Pediatr Nephrol."},{"issue":"6","key":"B16-20260330","doi-asserted-by":"crossref","first-page":"S447","DOI":"10.1016\/j.ekir.2022.04.042","article-title":"Clinico-pathological profile and outcomes of children with C3G in resource limited setting. Pos-022","volume":"7","author":"Vasudevan","year":"2022","journal-title":"Kidney Int Rep."},{"issue":"4 suppl 1","key":"B17-20260330","first-page":"S90","article-title":"Pipeline innovation in glomerular diseases","volume":"81","author":"Dudzenski","year":"2023","journal-title":"Am J Kidney Dis."},{"issue":"suppl 2","key":"B18-20260330","doi-asserted-by":"crossref","first-page":"S700","DOI":"10.1016\/j.jval.2020.08.1794","article-title":"PRO58 hospitalization frequency of membranoproliferative glomerulonephritis in Germany","volume":"23","author":"Seyed-Abbaszadeh","year":"2020","journal-title":"Value in Health."},{"issue":"11S","key":"B19-20260330","doi-asserted-by":"crossref","first-page":"271","DOI":"10.1681\/ASN.20233411S1271c","article-title":"Qualitative analysis reveals insights to meet the needs of patients with C3 glomerulopathy (C3G): TH-PO644","volume":"34","author":"Woolley","year":"2023","journal-title":"J Am Soc Nephrol."},{"issue":"9","key":"B20-20260330","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1159\/000548245","article-title":"Clinical presentation, treatment patterns, burden of disease and the association of proteinuria with clinical outcomes in C3 glomerulopathy and primary immune complex membranoproliferative glomerulonephritis: a systematic review","volume":"149","author":"Caravaca-Font\u00e1n","year":"2025","journal-title":"Nephron."},{"issue":"1","key":"B21-20260330","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1016\/j.ekir.2023.10.022","article-title":"Iptacopan in idiopathic immune complex\u2013mediated membranoproliferative glomerulonephritis: protocol of the APPARENT multicenter, randomized phase 3 study","volume":"9","author":"Vivarelli","year":"2024","journal-title":"Kidney Int Rep."},{"issue":"2","key":"B22-20260330","doi-asserted-by":"crossref","first-page":"202","DOI":"10.1093\/ndt\/gfad182","article-title":"C3G and Ig-MPGN\u2014treatment standard","volume":"39","author":"Noris","year":"2024","journal-title":"Nephrol Dial Transplant."},{"issue":"10S","key":"B23-20260330","doi-asserted-by":"crossref","DOI":"10.1681\/ASN.2024qdwvz5bg","article-title":"VALIANT: a randomized, multicenter, double-blind, placebo (PBO)-Controlled, phase 3 trial of pegcetacoplan for patients with native or post-transplant recurrent glomerulopathy (C3G) or primary immune complex membranoproliferative glomerulonephritis (IC-MPGN): SA-OR92","volume":"35","author":"Nester","year":"2024","journal-title":"J Am Soc Nephrol."},{"issue":"12","key":"B24-20260330","doi-asserted-by":"crossref","first-page":"2754","DOI":"10.1016\/j.ekir.2023.09.017","article-title":"Efficacy and safety of iptacopan in patients with C3 glomerulopathy","volume":"8","author":"Wong","year":"2023","journal-title":"Kidney Int Rep."},{"key":"B25-20260330","first-page":"S480","article-title":"PUK30-The burden associated with complement 3 glomerulopathy (C3G)","volume":"21","author":"George","year":"2018","journal-title":"Value in Health."},{"issue":"11","key":"B26-20260330","doi-asserted-by":"crossref","first-page":"3063","DOI":"10.1185\/03007990802457040","article-title":"Real-world physician and patient behaviour across countries: disease-specific programmes - a means to understand","volume":"24","author":"Anderson","year":"2008","journal-title":"Curr Med Res Opin."},{"issue":"12","key":"B27-20260330","doi-asserted-by":"crossref","first-page":"1707","DOI":"10.1080\/03007995.2023.2279679","article-title":"Real-world evidence generation from patients, their caregivers and physicians supporting clinical, regulatory and guideline decisions: an update on disease specific programmes","volume":"39","author":"Anderson","year":"2023","journal-title":"Curr Med Res Opin."},{"issue":"8","key":"B28-20260330","doi-asserted-by":"crossref","first-page":"e010352","DOI":"10.1136\/bmjopen-2015-010352","article-title":"Evidence for validity of a national physician and patient-reported, cross-sectional survey in China and UK: the disease specific programme","volume":"6","author":"Babineaux","year":"2016","journal-title":"BMJ Open."},{"key":"B29-20260330","doi-asserted-by":"crossref","first-page":"371","DOI":"10.2147\/DMSO.S120101","article-title":"Trends in medication use in patients with type 2 diabetes mellitus: a long-term view of real-world treatment between 2000 and 2015","volume":"9","author":"Higgins","year":"2016","journal-title":"Diabetes Metab Syndr Obes."},{"issue":"5","key":"B30-20260330","doi-asserted-by":"crossref","first-page":"353","DOI":"10.2165\/00019053-199304050-00006","article-title":"The validity and reproducibility of a work productivity and activity impairment instrument","volume":"4","author":"Reilly","year":"1993","journal-title":"Pharmacoeconomics."},{"key":"B31-20260330","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1186\/1477-7525-1-79","article-title":"The functional assessment of chronic illness therapy (FACIT) measurement system: properties, applications, and interpretation","volume":"1","author":"Webster","year":"2003","journal-title":"Health Qual Life Outcomes."},{"key":"B36-20260330","doi-asserted-by":"crossref","first-page":"S714","DOI":"10.1016\/j.jval.2020.08.1875","article-title":"PRO139 identification and description of global real-world DATA (RWD) sources for Iga nephropathy (IGAN), membranous nephropathy (MN) and C3 glomerulopathy (C3G)","volume":"23","author":"Rajput","year":"2020","journal-title":"Value in Health."},{"issue":"11","key":"B37-20260330","doi-asserted-by":"crossref","first-page":"928","DOI":"10.1007\/s10157-023-02387-1","article-title":"Demographics and treatment of patients with primary membranoproliferative glomerulonephritis in Japan using a national registry of clinical personal records","volume":"27","author":"Nakagawa","year":"2023","journal-title":"Clin Exp Nephrol."},{"issue":"1","key":"B38-20260330","first-page":"159","article-title":"Membranoproliferative glomerulonephritis over 20 years at a tertiary referral center in the UK","volume":"4","author":"O'Keeffe","year":"2024","journal-title":"Glomerular Dis."},{"issue":"4","key":"B39-20260330","doi-asserted-by":"crossref","first-page":"S243","DOI":"10.1016\/j.ekir.2024.02.499","article-title":"WCN24-479 characteristics of patients with complement 3 glomerulopathy (C3G) in a US multi-center assessment","volume":"9","author":"Ndife","year":"2024","journal-title":"Kidney Int Rep."},{"issue":"4","key":"B40-20260330","doi-asserted-by":"crossref","first-page":"1223","DOI":"10.1016\/j.ekir.2025.01.024","article-title":"Comparative analysis of proteinuria and longitudinal outcomes in immune complex membranoproliferative glomerulonephritis and C3 glomerulopathy","volume":"10","author":"Caravaca-Font\u00e1n","year":"2025","journal-title":"Kidney Int Rep."},{"issue":"3","key":"B44-20260330","doi-asserted-by":"crossref","first-page":"A176","DOI":"10.1016\/j.jval.2015.03.1018","article-title":"Work productivity loss and activity impairment across nineteen medical conditions in a representative sample of US adults","volume":"18","author":"Witt","year":"2015","journal-title":"Value in Health."}],"container-title":["Kidney360"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ovid.com\/10.34067\/KID.0000001059","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T20:03:40Z","timestamp":1786478620000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ovid.com\/10.34067\/KID.0000001059"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12,8]]},"references-count":35,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026]]}},"URL":"https:\/\/doi.org\/10.34067\/kid.0000001059","relation":{},"ISSN":["2641-7650"],"issn-type":[{"value":"2641-7650","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,12,8]]},"assertion":[{"value":"2025-08-13","name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-11-21","name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}}]}}