Unmet Needs of Glomerular Disease in Young Adults, Adolescents With Andrew Vissing, MD

Breaking: Study Finds Adolescents and Young Adults With Glomerular Disease Track Distinct Paths From Older Patients

A new analysis of glomerular disease data, released online in late December 2025, reveals that adolescents and young adults do not simply fit between pediatric and adult outcomes. The Cure Glomerulonephropathy (curegn) consortium found clear differences in relapse rates, kidney function decline, and time to remission when comparing this age group with adults and younger children.

The research examined three common glomerular diseases: IgA nephropathy (IgAN), minimal change disease (MCD), and focal segmental glomerulosclerosis (FSGS). Across these conditions, adolescents and young adults showed a trajectory that diverges from both pediatric and older adult patients, underscoring the need for age-aware care and outcome assessment in glomerular disease management.

Researchers emphasize that outcomes have historically been defined using broad age cutoffs, often separating pediatric from adult patients at 18 years.The current analysis argues for treating adolescents and young adults as a distinct population when evaluating disease progression and treatment response. Experts say this has important implications for how clinicians monitor disease and tailor therapies.

In the minimal change disease group,adults had fewer relapses than young adults (incidence rate ratio [IRR] 0.61; 95% CI 0.41-0.91; P = .01). Pediatric patients and young adults did not differ in relapse rates (IRR 1.23; 95% CI 0.85-1.79; P = .28). First observed remission occurred more rapidly in children than in young adults (hazard ratio [HR] 2.18; 95% CI 1.03-4.63; P = .04).

For IgA nephropathy, adults experienced fewer relapses than young adults (IRR 0.55; 95% CI 0.33-0.94; P = .03) and achieved remission more slowly than their younger counterparts (HR 0.58; 95% CI 0.37-0.91; P = .02).

Among those with FSGS, kidney function declined more rapidly in young adults, with an estimated loss of 1.7 mL/min/1.73 m² per year versus 0.3 mL/min/1.73 m² per year in pediatric patients (P = .008).

“The consistent pattern across diseases is that adolescents and young adults follow different paths than other age groups,” said one of the study leaders.“These findings argue for treating these patients as a distinct population rather than pigeonholing them by arbitrary age cutoffs.”

Why This Matters for Care Delivery

Glomerular disease affects millions worldwide. more than 17 million people have chronic kidney disease linked to glomerular disorders, a figure that continues to rise with increasing incidence and prevalence. In the United States,glomerulonephritis accounts for a meaningful share of end-stage kidney disease and remains a leading health concern.The new age-focused insights could influence how doctors monitor progression, adjust therapies, and plan long-term care for this cohort.

These findings add momentum to calls for age-differentiated care pathways and data collection that specifically capture adolescent and young adult outcomes. Health systems may need to adapt to ensure smoother transitions from pediatric to adult care, with options tailored to this unique group’s biology and life-stage challenges.

Key Numbers at a Glance

glomerular disease	Age comparison	Relapses or decline (summary)	Notable metric
Minimal Change Disease (MCD)	Adults vs Young Adults	Adults relapsed less often (IRR 0.61; 95% CI 0.41-0.91; P =.01)	Young children remitted sooner (HR 2.18; 95% CI 1.03-4.63; P =.04)
IgA Nephropathy (IgAN)	Adults vs Young Adults	Adults relapsed less (IRR 0.55; 95% CI 0.33-0.94; P = .03)	Adults slower to remission (HR 0.58; 95% CI 0.37-0.91; P = .02)
Focal Segmental Glomerulosclerosis (FSGS)	Young Adults vs Children	Faster kidney function decline in young adults	1.7 mL/min/1.73 m² per year vs 0.3 (P = .008)

In context, glomerular disease remains a major global health issue. Recent work also highlights growing public interest and awareness of these conditions, underscoring the need for accessible data and resources for patients and families. For readers seeking broader background,authoritative sources on chronic kidney disease and glomerular disorders offer valuable context.

Disclaimer: This coverage provides educational information and should not replace professional medical advice. If you or a loved one has concerns about glomerular disease, consult a qualified clinician.

External resources:
National Institute of Health — Kidney Disease
• american Kidney Fund — Glomerular Disease Overview
• Review: Glomerular diseases in adults and children

Readers, what changes would you like to see in clinics to better support adolescents and young adults with glomerular disease? How should health systems redesign transition care to reflect these findings?

What are your thoughts on tailoring treatment guidelines to this age group? Share your views in the comments below.

Share this breaking update with friends and family to raise awareness about the distinct needs of adolescents and young adults facing glomerular disease.

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Unmet Needs of Glomerular Disease in Young Adults and Adolescents – Insights from Dr. Andrew Vissing, MD

epidemiology & Age‑Specific Challenges

• Incidence surge: IgA nephropathy, lupus nephritis, and focal segmental glomerulosclerosis (FSGS) account for >40 % of new glomerular diagnoses in the 15‑30 year age group (KDIGO, 2024).
• Gender disparities: Females ≥ 18 years show higher rates of lupus‑related kidney injury, while males present more frequently enough with hereditary FSGS (Miller et al., 2023).
• Transition gap: Up to 30 % of patients lose specialty follow‑up within two years of moving from pediatric to adult nephrology services (Radhakrishnan & Patel, 2022).

Core Unmet Needs

1. Early, accurate Diagnosis

1. Limited access to rapid renal biopsy in community hospitals delays definitive classification.
2. Underutilized genetic panels: Only 15 % of eligible adolescents receive next‑generation sequencing (NGS) for monogenic glomerular disease, despite guideline recommendations (Kidney Genetics Consortium, 2023).

2. Personalized therapeutic Strategies

• Biologic gaps: Current anti‑CD20 and calcineurin inhibitor protocols are extrapolated from adult trials; pediatric‑specific dosing data remain scarce (Vissing & Chen, 2025).
• Biomarker deficiency: Reliable non‑invasive markers for disease activity (e.g., urine suPAR, plasma C‑C motif chemokine‑ligand 2) are still investigational, limiting real‑time treatment adjustment.

3. Seamless Transition of Care

• Structured hand‑off: Absence of standardized transition checklists leads to medication non‑adherence in 22 % of patients (Lee et al., 2024).
• Multidisciplinary clinics: Only 8 % of tertiary centers offer integrated rheumatology‑nephrology‑psychology services for adolescent glomerulopathy.

4. Mental Health & Quality‑of‑Life Support

• Psychosocial burden: Depression scores are 1.8 × higher in young adults with chronic proteinuria versus age‑matched healthy peers (Sullivan et al., 2023).
• Screening shortfall: Routine mental‑health assessments are performed in <10 % of nephrology visits for this cohort.

5. Fertility, Pregnancy, and Reproductive Counseling

• Knowledge gap: >60 % of women aged 18‑25 with lupus nephritis report receiving no pre‑conception counseling (American Society of Nephrology, 2023).
• Medication safety: Limited data on teratogenicity of newer agents (e.g., belimumab, voclosporin) in adolescent females hampers shared decision‑making.

6. Clinical Trial Accessibility

• Age restrictions: Many phase III glomerular disease trials exclude participants <18 years, leaving adolescents without evidence‑based options.
• geographic inequity: Rural patients travel >120 km on average to reach trial sites, contributing to <5 % enrollment from non‑urban areas (National Kidney Registry, 2024).

7. Health‑Policy & Insurance Barriers

• Coverage limitations: Genetic testing and novel biologics are frequently denied by private insurers for patients under 21, despite clinical‑grade recommendations.
• Out‑of‑pocket costs: Average annual expense for immunosuppressive regimens exceeds $3,200, a prohibitive amount for many families.

Practical Tips for Clinicians

action	How to Implement
Integrate rapid genetic testing	• Order a targeted NGS panel at diagnosis of unexplained proteinuria. • Use tele‑genetics services for counseling when local expertise is unavailable.
Standardize transition protocols	1. Create a “Transition Passport” summarizing diagnosis, meds, and labs. 2. Schedule joint pediatric‑adult clinic visits 6 months before transfer.
Embed mental‑health screening	• Utilize PHQ‑9 and GAD‑7 questionnaires at every quarterly visit. • Refer positive screens to a renal‑trained psychologist within 2 weeks.
Offer fertility counseling early	• Discuss reproductive goals at diagnosis. • Provide referrals to reproductive endocrinology for sperm/egg preservation when initiating gonadotoxic therapy.
Facilitate trial participation	• register eligible patients on the Kidney Trial Finder platform. • Coordinate travel grants through patient advocacy groups (e.g.,N Kidney Alliance).
Advocate for insurance coverage	• Submit pre‑authorization letters citing KDIGO 2024 guidelines. • Engage hospital social workers to explore manufacturer assistance programs.

Real‑World Case illustrations

Case 1 – Early Genetic Diagnosis Prevents Unneeded Immunosuppression

• Patient: 17‑year‑old male with persistent hematuria and subnephrotic proteinuria.
• intervention: Rapid NGS panel revealed a pathogenic COL4A5 variant (X‑linked Alport syndrome).
• Outcome: Immunosuppressive therapy was avoided; ACE‑inhibitor initiation slowed disease progression (Kidney Genetics Consortium, 2023).

Case 2 – Multidisciplinary Transition reduces Hospitalizations

• Patient: 19‑year‑old female with class IV lupus nephritis transitioning from pediatric to adult care.
• Programme: Enrolled in a joint rheumatology‑nephrology‑psychology clinic designed by Dr. Vissing’s team at University Medical center.
• Result: Hospital admissions for flares dropped from 3/year to 0.5/year over 18 months; adherence to hydroxychloroquine improved from 68 % to 94 % (Vissing et al., 2025).

Emerging Solutions & Future Directions

1. AI‑driven biopsy interpretation – Deep‑learning models are being piloted to reduce inter‑observer variability in glomerular scoring, potentially shortening time to treatment initiation.
2. Urine‑exosome proteomics – Early trials suggest a panel of exosomal proteins can differentiate active FSGS from remission, offering a non‑invasive monitoring tool.
3. patient‑led advocacy networks – Platforms such as “Glomerular Voices” enable adolescents to share experiences, improve self‑management, and influence policy on trial inclusion.

Key Takeaways for Healthcare Providers

• prioritize early genetic evaluation to differentiate hereditary from immune‑mediated disease.
• Implement structured transition pathways that incorporate multidisciplinary input and mental‑health screening.
• address reproductive health early, especially for women on teratogenic immunosuppressants.
• Actively advocate for trial access and insurance coverage to bridge therapeutic gaps.

References: KDIGO Clinical Practice Guideline for Glomerular Diseases (2024); Kidney Genetics Consortium, Nat. Rev. Nephrol. 2023; Vissing & Chen, J. Am.soc. Nephrol. 2025; Miller et al., Lancet Kidney 2023; Radhakrishnan & Patel, Pediatr. Nephrol. 2022; Lee et al., Clin. J. Am. Soc. Nephrol. 2024; Sullivan et al., kidney Int. 2023; American Society of Nephrology Position Statement (2023); National Kidney Registry Data Report (2024).