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Nephrotic SyndromeNCT01386957

Steroid Treatment of Idiopathic Nephrotic Syndrome

An observational study of Nephrotic Syndrome, run by IRCCS Azienda Ospedaliero-Universitaria di Bologna at 11 sites in Italy.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
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Trial summary

Idiopathic nephrotic syndrome (INS) is the most frequent glomerular disease in childhood. Currently, all children with INS are treated at onset with steroids. The optimal duration and dosage of steroid therapy is debated. Read more about this study

Who is it for?
Ages 6 months to 18 years
Conditions the study is for
Nephrotic Syndrome
How many people
143 participants
Where
11 sitesItaly
Study dates
Jul 2011to Dec 2017
Phase
Observational
Are there results?
None posted in the registry

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 6 months to 18 years
  • All sexes
  • No healthy volunteers
  • Child, Adult

Study population: Children aged 6 months - 18 years, diagnosed with an initial episode of idiopathic nephrotic syndrome (proteinuria> 40mg/m2/h or urine protein/creatine ratio > 2 mg/mg and hypoalbuminemia <2.5g/dL). Subjects will be enrolled from the first of July 2011 to the 31st of June 2013 from the following Italian regions Emilia Romagna, Lombardia, Toscana, Trentino Alto Adige, Friuli Venezia Giulia, Marche and Sicilia; the follow-up of each subject will continue for 24 months.

Who may be able to join

  • Age > 6 months and< 18 years
  • Idiopathic nephrotic syndrome
  • Ethical committee approval

Who cannot join

  • Age < 6 months or > 18 years
  • Congenital nephrotic syndrome
  • Secondary nephrotic syndrome (post-infectious, SLE, Schonlein-Henoch) defined by clinical features, low C3 and C4 levels, severe hypertension and macrohematuria
  • nephrotic syndrome associated to other syndromes (Dennys Drash, Frasier syndrome, et.cet) or to Wilms'tumor.

Trial locations and contacts

11 sites in 1 country.

11 sites in 1 country

Italy11 sites
  • PO Salesi, SOS Centro di Riferimento Regionale di Nefrologia e Dialisi Pediatrica

    Ancona

  • Ospedale Pediatrico Giovanni XXIII

    Bari, 70126

  • Azienda Ospedaliera-Universitaria Sant'Orsola Malpighi

    Bologna, Emilia-Romagna, 40138

  • Azienda Ospedaliera Universitaria Meyer, SOD Complessa Nefrologia Pediatrica

    Florence

  • Istituto Giannina Gaslini, Dept of Pediatric Nephrology

    Genova, 16100

  • AOU Policlinico G Martino UOS dipartimentale Nefrologia e Reumatologia pediatrica

    Messina

  • Fondazione IRCCS Ca' Granda Ospedale MAggiore Policlinico, UOC Nefrologia e Dialisi

    Milan

  • Ospedale dei bambini Di Cristina, UOC Nefrologia Pediatrica

    Palermo

  • Ospedale degli Angeli, Dept of Pediatrics

    Pordenone, 33170

  • Ospedale Pediatrico Burlo Garofalo

    Trieste

  • Università di Trieste, Department of Life Sciences

    Trieste

Other trials in Italy

About this study

Official title: Steroid Treatment of Childhood Idiopathic Nephrotic Syndrome: Epidemiology, Therapeutic Adequacy, Medium and Long Term Outcomes. A Prospective Observational Cohort Study.

Idiopathic nephrotic syndrome (INS) is the most frequent glomerular disease in childhood. Currently, all children with INS are treated at onset with steroids. The optimal duration and dosage of steroid therapy is debated. For each patient, the challenge is to minimise potential side effects of steroids, while achieving a good clinical response.

The aim of our study is to assess the benefits and potential adverse effects of a prolonged initial corticosteroid regimen, for the treatment of the initial episode. The results will be compared with data obtained retrospectively. In addition genetic studies will be undertaken with the aim of evaluating pharmacodynamics of steroid treatment with the ultimate goal to individualise treatment in single patients.

  1. Study group: children aged 6 months - 18 years, diagnosed with an initial episode of idiopathic nephrotic syndrome
  2. Control group: data of children with a onset INS between January 2007 and December 2009 from the same area of the study group and treated with a short steroid regimen will be retrospectively analysed and compared
Read the detailed description

Background Idiopathic nephrotic syndrome (INS) is the most frequent glomerular disease in childhood, with an incidence of 2-4 cases per 100,000 children. Currently, all children with INS are treated at onset with steroids. Approximately 80% of cases respond to oral corticosteroid therapy, but 75-80% of these children will experience relapses which can recur over many years. The optimal duration and dosage of steroid therapy at onset and during subsequent relapses is debated. For each patient, the challenge is to minimise potential side effects of steroid therapy (hypertension, bone disease, Cushing syndrome, obesity, growth retardation, cataracts and a variety of psychological, social and behavioural disturbances) while achieving a good clinical response. This is particularly difficult at the beginning of the illness, because of the lack of reliable indicators that allow the identification of patients who will respond poorly or will experience frequent relapses. In 2006 the Cochrane Collaboration published the first systematic review of corticosteroid therapy for childhood idiopathic nephrotic syndrome. They concluded that children with the first episode of steroid sensitive INS should be treated for a minimum of three months, to achieve a reduction in the subsequent relapse rate.

The fine border between the optimal dose of steroids and the collateral effects can not be overlooked given the results of some recent studies (relative to patients with chronic inflammatory bowel disease or children with acute lymphoblastic leukemia subject to prolonged cycles of steroid therapy) based on the pharmacogenetic evaluation of the diverse individual responses to steroids. Clinical data supports the concept that the collateral effects of steroids are not exclusively dose related, but can depend on constitutional hypersensitivity or resistance, at times specific for a particular corticosteroid.

This diverse individual response can depend on a number of factors. The activity of the corticosteroids is mediated by interactions with the DNA (genomic mechanism) or by a direct interaction with the cellular membranes (non-genomic mechanism). The genomic effects are by far the most important and are mediated by the interactions of the steroids with a specific cytoplasmic receptor (GR). The binding of the steroid determines the activation of the receptor and its translocation within the nucleus where it induces (transactivation) or inhibits (transcriptional interference) the synthesis of numerous regulatory proteins. The mechanism of transactivation is likely responsible for the major part of collateral effects (suppression of the hypothalamic-hypophysial-adrenal axis, genesis of glaucoma and diabetes), while the anti-inflammatory effects are for the most part tied to transcriptional inhibition (with reduced synthesis of pro-inflammatory cytokines, cyclic oxygenase2, inducible forms of nitrite synthesis and finally a reduction in synthesis of receptors for Fc and C3).

There are individual diverse molecular anomalies of the gene for the glucocorticoid receptors (hGR/NR3C1) that have bean uncovered: for example the presence of polymorphisms of the gene hGR is correlated with receptor hyperactivity (Bcl1 e N3635) or relative resistance of the glucocorticoid receptor (polymorphism ER22/23EK); a further 15 mutations have already been identified to be associated with corticosteroid resistance.

These facts open interesting possibilities for pharmacological research with the hypothesis of being able to adjust steroid therapy in response to an individuals genetic make-up and predict the appearance of side effects.

AIM The aim of our study is to assess the benefits and potential adverse effects of a prolonged initial corticosteroid regimen across four Italian regions, for the treatment of the initial episode of INS. The results will be compared with data obtained retrospectively from the analysis of a control group of INS, treated with a short steroid regimen during the previous 3 years in the same area. In addition genetic studies will be undertaken with the aim of evaluating pharmacogenetics and pharmacodynamics of steroid treatment with the ultimate goal to individualise treatment in single patients.

Study population:

  1. Study group: children aged 6 months - 18 years, diagnosed with an initial episode of idiopathic nephrotic syndrome (proteinuria> 40mg/m2/h or urine protein/creatine ratio > 2 mg/mg and hypoalbuminemia <2.5g/dL). Subjects will be enrolled from the first of July 2011 to the 30th of June 2013; the follow-up of each subject will continue for 24 months.
  2. Control group: data of children with a onset INS between January 2007 and December 2009 from the same area of the study group and treated with a short steroid regimen will be retrospectively analysed and compared. Data will be recorded anonymously through an online database. The epidemiological, clinical, therapeutic parameters collected will be the same of the intervention group, except for pharmacogenetic and pharmacodynamic tests, and behavioral questionnaires.

All study group patients will be subjected to the following protocol:

Induction therapy: prednisone 60mg/m2/day in 2 divided doses. Patients achieving remission within 10 days, will continue this dosage until the 28th day, whereas patients not achieving remission within 10 days, will continue this dosage until the 42nd day. Moreover, from the 3rd day of remission prednisone will be given in a single morning dose.

Maintenance therapy:

Patients going into remission during the induction therapy will have steroids tapered over a 16 weeks period:

  • 40 mg/m2/alt day in a single morning dose for 4 weeks,
  • 30 mg/m2/alt day in a single morning dose for 2 weeks,
  • 22.5 mg/m2/alt day in a single morning dose for 2 weeks,
  • 15 mg/m2/alt day in a single morning dose for 2 weeks,
  • 7.5 mg/m2/alt day in a single morning dose for 2 weeks,
  • 4.5 mg/m2/alt day in a single morning dose for 4 weeks,
  • stop therapy. A subgroup of patients (estimated to be 100) will undergo pharmacogenetic and pharmacodynamic studies. The pharmacogenetic study will evaluate the presence of gene polymorphisms that modifies the numbers of functioning receptors and their affinity for steroids (genes studied are showed in Tab 3). The pharmacodynamic study will evaluate the in vitro response to steroids on blood mononuclear cells: individual sensibility to steroids will be detected before and during steroid treatment and compared with the clinical response, in order to tailor treatment in the future.

Relapses. Relapses will be treated with a further prolonged steroid regimen witch is described in the protocol per extenso.

Patient monitoring:

  1. Clinical examination Height, weight, BMI, blood pressure Parent heights recording (for familial target) (at onset, remission, 4th, 20th weeks, 6, 12, 18, 24 months)
  2. Biochemistry (at onset, 4th week, 24 months) Blood CBC; serum glycemia, urea, creatinine, uric acid, proteins, albumin, cholesterol, HDL, LDL, triglycerides, a2globulins, gammaglobulins, PT, PTT, fibrinogen, Anti-Thrombin III°, Na, K, Cl, Ca, P, blood sample for pharmacogenetic and pharmacodynamic study Urine Urine examination. Proteinuria and creatininuria on a 24h sample
  3. Behavioral questionnaires(at onset, 4th, 6, 12, 24 months)

ASEBA CBCL Achenbach System of Empirically Based Assessment Child Behavior Checklist.

EQ-5D-PROXY EuroQol Group (version for parents) PedsQL Pediatric Quality of Life Inventory (version for parents and children) EQ-5D-Y EuroQol Group (version for children)

The following epidemiological and therapeutical data will be collected

Epidemiological data

  • Sex
  • Age at onset
  • Season
  • Ethnicity
  • Days of hospitalization.
  • Number of blood tests performed during the follow-up

Therapeutic data

  • Time to remission (days), number of relapses at 6-12-24 months
  • Time and total dose (mg/m2) of induction therapy
  • Time and total dose (mg/m2) of maintenance therapy
  • Prednisone total dose at the end of the 2yrs of follow-up
  • Albumin infusions (g/kg/patient)
  • Use of albumin infusions and diuretics
  • Number of immunosuppressive drugs associated to prednisone (and total dose in mg/kg)
Keywords
Nephrotic Syndrome, Steroid treatment, Proteinuria, Child
Medical subject headings
Nephrotic Syndrome, Proteinuria

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

Study groups in NCT01386957
Study groupRoleWhat they receive
Study groupchildren aged 6 months - 18 years, diagnosed with an initial episode of INS occurring from the first of July 2011 to the 31st of june 2013.

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted1 Jul 2011 (estimated)
  2. Study startJul 2011
  3. Primary completionNov 2016
  4. Study completionDec 2017

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
143 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT01386957
Sponsor's protocol ID
SNI-NET 2011
Status last verified
Jul 2021
First submitted
30 Jun 2011
Last updated
20 Jul 2021
Results posted
No
Data monitoring committee
No

Publications

  • Nardini B, La Scola C, Corrado C, Edefonti A, Giordano M, Pillon R, Mastrangelo AP, Materassi M, Alberici I, Morello W, Puccio G, Montini G, Pasini A. Time to remission in childhood steroid sensitive nephrotic syndrome: a change in perspective. Eur J Pediatr. 2025 Mar 20;184(4):262. doi: 10.1007/s00431-025-06090-z.

    PubMed 40111516
  • Pasini A, Bertulli C, Casadio L, Corrado C, Edefonti A, Ghiggeri G, Ghio L, Giordano M, La Scola C, Malaventura C, Maringhini S, Mastrangelo AP, Materassi M, Mencarelli F, Messina G, Monti E, Morello W, Puccio G, Romagnani P, Montini G; NefroKid Study Group. Childhood Idiopathic Nephrotic Syndrome: Does the Initial Steroid Treatment Modify the Outcome? A Multicentre, Prospective Cohort Study. Front Pediatr. 2021 Jul 8;9:627636. doi: 10.3389/fped.2021.627636. eCollection 2021.

    PubMed 34307246
  • Pasini A, Aceto G, Ammenti A, Ardissino G, Azzolina V, Bettinelli A, Cama E, Cantatore S, Crisafi A, Conti G, D'Agostino M, Dozza A, Edefonti A, Fede C, Groppali E, Gualeni C, Lavacchini A, Lepore M, Maringhini S, Mariotti P, Materassi M, Mencarelli F, Messina G, Negri A, Piepoli M, Ravaglia F, Simoni A, Spagnoletta L, Montini G; NefroKid Study Group. Best practice guidelines for idiopathic nephrotic syndrome: recommendations versus reality. Pediatr Nephrol. 2015 Jan;30(1):91-101. doi: 10.1007/s00467-014-2903-7. Epub 2014 Aug 17.

    PubMed 25127916

Questions about this trial

What is this clinical trial studying?

An observational study of Nephrotic Syndrome, run by IRCCS Azienda Ospedaliero-Universitaria di Bologna at 11 sites in Italy.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 3 inclusion and 4 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: finished, as of the sponsor's last update on 20 Jul 2021. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 11 sites in Italy. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT01386957, which also lists 3 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 20 Jul 2021.

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