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Pediatric Longitudinal Glomerular Disease: a PNRC Multi-Institutional Cohort Study (PLUGGED IN)

5. november 2026 opdateret af: Pediatric Nephrology Research Consortium

To review and collect information from a patients medical record in order to study and research how to help other children with glomerular diseases.

Studieoversigt

Detaljeret beskrivelse

This study is designed to look at the natural history of glomerular diseases in children and adolescents in order to direct the research to find cures. This study will also possibly help identify or locate participants that may be eligible for clinical trials.

Mixed retrospective-prospective cohort study (longitudinal, observational, non-interventional study) to research the natural history of glomerular disease in children and adolescents in the US.

Objective: Evaluate the natural history of glomerular disease in children in the United States.

Aim 1: To investigate and determine important relationships among patient/disease characteristics, natural history, treatments, histopathology, and outcomes among pediatric patients with glomerular disease, both across and within pre-specified disease cohorts (see below), by means of multicenter collection, storage, and analysis of longitudinal data.

Aim 2: To provide a platform for and facilitate, with participant consent, rapid assessment of potential participant eligibility for planned and/or ongoing investigator-initiated and/or industry-sponsored clinical trials of pediatric glomerular disease.

20 initial sites were selected to recruit participants with glomerular disease. Patients diagnosed starting in July 2023, as well as newly diagnosed patients can be enrolled. Participants will be followed until 21 years of age.

Data Collection at 6 month timepoints +/- 30 days. Collection starts with demographic information, medical history, and family medical history. Also collected at enrollment and at each time point are standard of care labs, hospitalizations, renal biopsy images, pathology reports and specialized or genetic testing. Participants will be asked to answer quality of life and social determinate of health questionnaires at enrollment and annually. These are optional and will not affect eligibility.

Enrollment expected to be 500 participants per year.

Undersøgelsestype

Observationel

Tilmelding (Anslået)

1000

Kontakter og lokationer

Dette afsnit indeholder kontaktoplysninger for dem, der udfører undersøgelsen, og oplysninger om, hvor denne undersøgelse udføres.

Studiekontakt

Undersøgelse Kontakt Backup

Studiesteder

Deltagelseskriterier

Forskere leder efter personer, der passer til en bestemt beskrivelse, kaldet berettigelseskriterier. Nogle eksempler på disse kriterier er en persons generelle helbredstilstand eller tidligere behandlinger.

Berettigelseskriterier

Aldre berettiget til at studere

Ikke ældre end 18 år (Barn, Voksen)

Tager imod sunde frivillige

Ingen

Køn, der er berettiget til at studere

Alle

Prøveudtagningsmetode

Ikke-sandsynlighedsprøve

Studiebefolkning

The study population will be less than 18 years of age at time of diagnosis and consent, categorized into the following prespecified disease cohorts:

  1. IgA Nephropathy
  2. IgA Vasculitis
  3. Idiopathic Immune Complex Glomerulonephritis (ex: IC-MPGN, Full house GN without diagnosis of Lupus, etc.)
  4. C3 Glomerulopathy
  5. Membranous Nephropathy
  6. Focal and Segmental Glomerulosclerosis
  7. Minimal Change Disease
  8. Anti-Neutrophilic Cytoplasmic antibody-GN (ANCA)
  9. Lupus Nephritis
  10. Alport Syndrome
  11. Infection-related or post-infectious Glomerulonephritis (with or without biopsy)
  12. Idiopathic Nephrotic Syndrome (with or without biopsy)

Beskrivelse

Inclusion Criteria:

Children with biopsy-proven glomerular disease or populations with a clinical diagnosis of glomerular disease

Exclusion Criteria:

Patients who declined (or unable to provide informed consent, + informed assent of minors) to participate Patients with End Stage Kidney Disease (Stage 5 CKD, eGFR < 15mL/min/1.73m2)

Studieplan

Dette afsnit indeholder detaljer om studieplanen, herunder hvordan undersøgelsen er designet, og hvad undersøgelsen måler.

Hvordan er undersøgelsen tilrettelagt?

Design detaljer

  • Observationsmodeller: COHORT
  • Tidsperspektiver: OTHER

Kohorter og interventioner

Gruppe / kohorte
IgA Nephropathy (with biopsy)

Subjects diagnosed with IgA Nephropathy less than 18 years of age

IgA Vasculitis (with biopsy)

Subjects diagnosed with IgA Vasculitis less than 18 years of age

Idiopathic Immune Complex Glomerulonephritis (with biopsy)

Subjects diagnosed with Idiopathic Immune Complex Glomerulonephritis less than 18 years of age

C3 Glomerulopathy (with biopsy)

Subjects diagnosed with C3 Glomerulopathy less than 18 years of age

Membranous Nephropathy (with biopsy)

Subjects diagnosed with Membranous Nephropathy less than 18 years of age

Focal and Segmental Glomerulosclerosis (with biopsy)

Subjects diagnosed with Focal and Segmental Glomerulosclerosis less than 18 years of age

Minimal Change Disease (with biopsy)

Subjects diagnosed with Minimal Change Disease less than 18 years of age

Anti-Neutrophilic Cytoplasmic antibody-GN (ANCA) (with biopsy)

Subjects diagnosed with Anti-Neutrophilic Cytoplasmic antibody-GN (ANCA) less than 18 years of age

Lupus Nephritis (with biopsy)

Subjects diagnosed with Lupus Nephritis less than 18 years of age

Alport Syndrome (with biopsy)

Subjects diagnosed with Alport Syndrome less than 18 years of age

Infection-related or post-infectious Glomerulonephritis (with or without biopsy)

Subjects diagnosed with Infection-related or post-infectious Glomerulonephritis (with or without biopsy) less than 18 years of age

Idiopathic Nephrotic Syndrome (with or without biopsy)

Subjects diagnosed with Idiopathic Nephrotic Syndrome (with or without biopsy) less than 18 years of age

Hvad måler undersøgelsen?

Primære resultatmål

Resultatmål
Foranstaltningsbeskrivelse
Tidsramme
Proteinuria, and change over time thereof (urine protein-creatinine ratio)
Tidsramme: Baseline and follow up timepoints (every 6 months) post-diagnosis to be reviewed at end of years 1 and 2 of data collection

To characterize the longitudinal trajectory and progression of proteinuria, measured by urine protein-creatinine ratio (UPCR), following diagnosis and to identify baseline demographic and clinical factors associated with changes in proteinuria over time.

Baseline and follow up timepoints (every 6 months) post-diagnosis to be reviewed at end of years 1 and 2 of data collection

Sekundære resultatmål

Resultatmål
Foranstaltningsbeskrivelse
Tidsramme
Percent change in estimated glomerular filtration rate (eGFR) from baseline to follow up
Tidsramme: Two years after study initiation

To characterize longitudinal changes in kidney function as measured by estimated glomerular filtration rate (eGFR) and to identify baseline demographic and clinical factors associated with changes in kidney function over time.

Two years after study initiation
eGFR, and change (from baseline) overtime
Tidsramme: Two years after study initiation

Measures how much a patient's kidney filtering capacity has increased or decreased over time compared to their initial starting measurement

Two years after study initiation
Growth trajectory, derived from height and weight
Tidsramme: Two years after study initiation

Describe longitudinal growth patterns (e.g., height, weight, BMI z -scores) and identify disease-related factors associated with impaired growth trajectories. Growth trajectory will be defined as change in height and weight over time. We will calculate height-for-weight Z score, weight-for-height Z score and BMI Z-score over time.

Two years after study initiation
Developmental trajectory derived from QOL survey of caregiver
Tidsramme: Two years after study initiation

Characterizing developmental progression, measured over time and identify clinical factors associated with delays or deviations from expected developmental milestones. Time to attainment of key developmental milestones (derived from QOL survey of caregiver) will be summarized using mean and standard deviation or median and interquartile range. The proportion of patients with delayed development at baseline (first assessment after diagnosis) and follow up will also be reported.

Two years after study initiation
Educational attainment trajectory and milestones, derived from QOL of caregiver
Tidsramme: Two years after study initiation

Evaluation of educational outcomes over follow-up and examine associations between disease severity and academic achievement. Time to attainment of key educational milestones will be summarized using mean and standard deviation or median and interquartile range. The proportion of patients with delayed educational attainment at baseline (first assessment after diagnosis) and follow up will also be reported.

Two years after study initiation
Caregiver effect: Missed days of school and work for caregiver
Tidsramme: Two years after study initiation

To quantify school absenteeism and examine its relationship with disease burden and clinical progression. Missed school days will be summarized using descriptive statistics (mean and standard deviation or median and interquartile range as appropriate)

Two years after study initiation
Unplanned Hospitalization(s)
Tidsramme: Two years after study initiation

To estimate the frequency and timing of unplanned hospitalizations and identify factors associated with unplanned hospitalizations. Unplanned Hospitalization will be summarized using descriptive statistics. The association between clinical factors and number of unplanned hospitalizations will be examined with a multivariable negative binomial regression model

Two years after study initiation
Infections (Urine, ear, skin/tissue, URI and others)
Tidsramme: Two years after study initiation

To characterize the incidence and types of infections during follow -up and evaluate clinical factors associated with increased infection risk. The incidence and type of infection will be reported with the corresponding 95% CI at each follow up time point. The association between clinical factors and infection will be evaluated using multivariable mixed models with random effects for patient and site

Two years after study initiation
Histopathological Response based on serial biopsy reports and images
Tidsramme: Two years after study initiation

To describe longitudinal changes in histopathological findings and evaluate associations between pathological features and disease progression. Histopathological Response will each be summarized in the analytic population during the exposure period using descriptive statistics. Distributions will be compared across age groups where appropriate, using Chi -Square or Fisher's exact test, for categorical variables, and Kruskal-Wallis for continuous variables

Two years after study initiation
Renal failure (including dialysis-dependence)
Tidsramme: Two years after study initiation

To determine the incidence and timing of progression to renal failure (including dialysis-dependence) and to identify prognostic factors associated with risk of progression. The incidence of renal failure will be summarized with the corresponding 95% confidence interval for each disease group.

The association between clinical characteristics and time to renal failure will be evaluated using Fine and Gray subdistribution hazard model with prespecified covariates (see above); accounting for mortality (not related to renal failure) and renal transplantation as competing risks.

Two years after study initiation
Renal Transplantation
Tidsramme: Two years after study initiation

To characterize the incidence and timing of renal transplantation and describe clinical characteristics associated with progression to transplant. The incidence of renal transplantation will be summarized with the corresponding 95% confidence interval for each disease group. Association between clinical characteristics and time to renal transplantation will be evaluated with Fine and Gray sub distribution hazard model with prespecified covariates; accounting for mortality (not related to renal transplantation) and renal failure as competing risks. Time to renal transplantation will be defined as time from diagnosis of GD to the first occurrence of renal transplantation and survivors who do not receive renal transplantation will be censored at the last day of follow up or end of study, whichever occurs first.

Two years after study initiation
Death
Tidsramme: Two years after study initiation

To estimate overall survival and identify baseline demographic and clinical factors associated with risk of death during follow-up. Association between clinical characteristics and mortality will be evaluated using a multivariable Cox proportional hazards regression with prespecified baseline and time-varying covariates (see below). Survival time will be defined as time from diagnosis of GD to death and survivors will be censored at the last day of follow up or end of study, whichever occurs first.

Two years after study initiation

Samarbejdspartnere og efterforskere

Det er her, du vil finde personer og organisationer, der er involveret i denne undersøgelse.

Efterforskere

  • Ledende efterforsker: Joseph Gaut, MD, PhD, Washington University School of Medicine
  • Ledende efterforsker: Carla Nester, MD, University of Iowa
  • Ledende efterforsker: William Smoyer, MD, Nationwide Children's Hospital

Publikationer og nyttige links

Den person, der er ansvarlig for at indtaste oplysninger om undersøgelsen, leverer frivilligt disse publikationer. Disse kan handle om alt relateret til undersøgelsen.

Generelle publikationer

Datoer for undersøgelser

Disse datoer sporer fremskridtene for indsendelser af undersøgelsesrekord og resumeresultater til ClinicalTrials.gov. Studieregistreringer og rapporterede resultater gennemgås af National Library of Medicine (NLM) for at sikre, at de opfylder specifikke kvalitetskontrolstandarder, før de offentliggøres på den offentlige hjemmeside.

Studer store datoer

Studiestart (Faktiske)

1. oktober 2026

Primær færdiggørelse (Anslået)

1. december 2031

Studieafslutning (Anslået)

1. juni 2032

Datoer for studieregistrering

Først indsendt

21. oktober 2026

Først indsendt, der opfyldte QC-kriterier

5. november 2026

Først opslået (Faktiske)

12. november 2026

Opdateringer af undersøgelsesjournaler

Sidste opdatering sendt (Faktiske)

12. november 2026

Sidste opdatering indsendt, der opfyldte kvalitetskontrolkriterier

5. november 2026

Sidst verificeret

1. november 2026

Mere information

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