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

5. listopadu 2026 aktualizováno: 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.

Přehled studie

Detailní popis

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.

Typ studie

Pozorovací

Zápis (Odhadovaný)

1000

Kontakty a umístění

Tato část poskytuje kontaktní údaje pro ty, kteří studii provádějí, a informace o tom, kde se tato studie provádí.

Studijní kontakt

Studijní záloha kontaktů

Studijní místa

    • Massachusetts
      • Boston, Massachusetts, Spojené státy, 02115
    • Ohio
      • Cincinnati, Ohio, Spojené státy, 45229

Kritéria účasti

Výzkumníci hledají lidi, kteří odpovídají určitému popisu, kterému se říká kritéria způsobilosti. Některé příklady těchto kritérií jsou celkový zdravotní stav osoby nebo předchozí léčba.

Kritéria způsobilosti

Věk způsobilý ke studiu

Ne starší než 18 let (Dítě, Dospělý)

Přijímá zdravé dobrovolníky

Ne

Pohlaví způsobilá ke studiu

Všechno

Metoda odběru vzorků

Vzorek nepravděpodobnosti

Studijní populace

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)

Popis

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)

Studijní plán

Tato část poskytuje podrobnosti o studijním plánu, včetně toho, jak je studie navržena a co studie měří.

Jak je studie koncipována?

Detaily designu

  • Observační modely: COHORT
  • Časové perspektivy: OTHER

Kohorty a intervence

Skupina / kohorta
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

Co je měření studie?

Primární výstupní opatření

Měření výsledku
Popis opatření
Časové okno
Proteinuria, and change over time thereof (urine protein-creatinine ratio)
Časové okno: 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

Sekundární výstupní opatření

Měření výsledku
Popis opatření
Časové okno
Percent change in estimated glomerular filtration rate (eGFR) from baseline to follow up
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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)
Časové okno: 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)
Časové okno: 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
Časové okno: 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)
Časové okno: 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
Časové okno: 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
Časové okno: 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

Spolupracovníci a vyšetřovatelé

Zde najdete lidi a organizace zapojené do této studie.

Vyšetřovatelé

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

Publikace a užitečné odkazy

Osoba odpovědná za zadávání informací o studiu tyto publikace poskytuje dobrovolně. Mohou se týkat čehokoli, co souvisí se studiem.

Obecné publikace

Termíny studijních záznamů

Tato data sledují průběh záznamů studie a předkládání souhrnných výsledků na ClinicalTrials.gov. Záznamy ze studií a hlášené výsledky jsou před zveřejněním na veřejné webové stránce přezkoumány Národní lékařskou knihovnou (NLM), aby se ujistily, že splňují specifické standardy kontroly kvality.

Hlavní termíny studia

Začátek studia (Aktuální)

1. října 2026

Primární dokončení (Odhadovaný)

1. prosince 2031

Dokončení studie (Odhadovaný)

1. června 2032

Termíny zápisu do studia

První předloženo

21. října 2026

První předloženo, které splnilo kritéria kontroly kvality

5. listopadu 2026

První zveřejněno (Aktuální)

12. listopadu 2026

Aktualizace studijních záznamů

Poslední zveřejněná aktualizace (Aktuální)

12. listopadu 2026

Odeslaná poslední aktualizace, která splnila kritéria kontroly kvality

5. listopadu 2026

Naposledy ověřeno

1. listopadu 2026

Více informací

Termíny související s touto studií

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