Collagen Type-4 NephropathiesNCT01465126
Enalapril in Collagen Type 4 Nephropathy
An observational study of Collagen Type-4 Nephropathies, run by University of Sao Paulo.
Trial summary
Background: Collagen IV-related nephropathies can lead to End Stage Renal Disease. Experimental studies have shown renin angiotensin aldosterone system blockade can reduce proteinuria and preserve renal function. In humans there is no proven treatment. Read more about this study
- Who is it for?
- Ages Up to 18 years
- Conditions the study is for
- Collagen Type-4 Nephropathies
- How many people
- 19 participants
- Where
- No sites listed yet
- Study dates
- Jan 2011to Oct 2011
- 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 Up to 18 years
- All sexes
- No healthy volunteers
- Child, Adult
Study population: Patients with Collagen type 4 nephropathies and proteinuria followed in Pediatric Nephrology Unit of Instituto da Criança - HCFMUSP
Who may be able to join
- age under 18 years old
- non-adherent to the exams and evaluations
Who cannot join
- creatinine clearance < 60 ml/minute/1.73m2BS
About this study
Official title: Collagen Type 4-related Nephropathies: From Alport to Thin Membrane Nephropathy. A Series of Cases Treated With Angiotensin Converting Enzyme Inhibitor
Background: Collagen IV-related nephropathies can lead to End Stage Renal Disease. Experimental studies have shown renin angiotensin aldosterone system blockade can reduce proteinuria and preserve renal function. In humans there is no proven treatment. Methods: This is a retrospective study of patients with Collagen IV-related nephropathies and proteinuria treated with enalapril analyzing the evolution of proteinuria and renal function, as well as predictive variables of progression to end stage renal disease. Outcome was creatinine clearance < 60 ml/min/1.73m2.
Read the detailed description
Introduction Collagen IV-related nephropathies, caused by mutations in the three genes encoding collagen type IV of the basal membrane, represent a spectrum of phenotypes from Alport syndrome (AS) to thin basement membrane nephropathy (TBMN) (1). Subtypes are X-linked AS (XLAS) which corresponds approximately 80% of AS, autosomal recessive AS (ARAS), counting for 15% of AS, and the autosomal dominant forms, represented by autosomal dominant AS (ADAS, 5% of AS) and TBMN, which is believed to be present in 1% of the population (1).
Besides renal manifestations, these diseases can present cochlear and ocular abnormalities (2). However, the hallmark of Collagen IV-related nephropathies is hematuria. Proteinuria is detected during life, being a marker of disease progression. All males with XLAS develop proteinuria and, eventually, progressive renal insufficiency, which leads to end-stage renal disease (ESRD). Overall, an estimated 60% reach ESRD by age 30 years, and 90% by age 40 years (2). Approximately 12% of females with XLAS develop ESRD before age 40 years, increasing to 30% by age 60 years (3). Most individuals with ARAS develop significant proteinuria in late childhood or adolescence and ESRD before age 30 years. Progression to ESRD is slower in individuals with ADAS. Similarly, TBMN is characterized clinically by persistent microhematuria often observed in childhood. TBMN is rarely associated with extrarenal abnormalities and proteinuria. Hypertension and progression to ESRD are unusual (4).
Despite the severity of disease, the high rate of ESRD, and the increasing knowledge about genetics and diagnosis, there is currently no proven treatment to AS. So far, the therapeutic approach is limited to angiotensin-II (AII) blockade, blood pressure control and diet counseling. Angiotensin-converting enzyme inhibitors (ACEi) or angiotensin receptor blockers (ARB) are usually started once proteinuria appears but there is no clear evidence that such treatment alters the natural history of the disease in humans.
Our goal was to describe the evolution of a series of cases with Collagen IV-related nephropathies and proteinuria treated with enalapril, as well as predictive variables of progression to ESRD.
Patients and Methods This is a retrospective study of collagen IV-related nephropathies patients followed at Instituto da Criança - HCFMUSP from 1999 to 2010. All patients presented glomerular hematuria (erythrocyte dysmorphism and/or red blood cell cast in the urinary sediment) and proteinuria. In 16 of 19 cases the diagnosis was based on familial history and renal histology findings which showed negative immunofluorescence and the ultrastructural abnormalities of the glomerular basement membrane (GBM) showing TBMN (uniform or diffuse attenuation of the GBM without the typical lamellation and thickening that is seen in AS) or AS (defects in terms of alternating attenuation, splitting, lamellation, and thickening along the GBM). However, it is very difficult to discriminate between the initial stage of AS and TBMN. Three patients were not submitted to renal biopsy since the familial history and the renal histology of relatives were characteristics of the disease. Only adherent patients were included, which was based on presence in attendance and exams.
The patients visited the outpatient clinic at least once every 3 months and had at least 2 years of follow up. The following parameters were evaluated at baseline: age, renal function (serum creatinine, urea, and creatinine clearance according to Schwartz Formula) (5), 24 hour proteinuria, blood pressure and light and electron microscopy of the renal fragment.
In all patients, enalapril was employed as a RAAS blocker, observing benefits and side effects as hypotension symptoms and/or signs. Our protocol intends to reach a dose of 0.3 mg/kg/day.
The following parameters were also collected during follow up: serum creatinine and urea, 24 hour proteinuria and creatinine clearance estimated by stature (Schwartz Formula).
In this study hyperfiltration is defined as ≥ 145 ml/minute/1.73m2BS, based on Piepsz et al and Prestidge et al data (6,7).
Statistical analysis Mann-Whitney and chi-square (or Fisher) tests were used in the univariate analysis. For the analysis of the effect of enalapril on proteinuria during the first 2 years of treatment we have used a non-parametric repeated measures analysis (Friedmann´s test). We have analyzed the main predictive variables of CKD progression, by considering a creatinine clearance below 60 ml/min/1.73m2 as an outcome.
- Conditions
- Collagen Type-4 Nephropathies
What is being measured
The primary outcome is the main question the study is designed to answer.
proteinuria
evaluate the proteinuria during two years of treatment with enalapril
Measured: two years
Secondary outcomes (1)
evaluate the creatinine clearance during treatment with enalapril
Measured: two years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted4 Nov 2011 (estimated)
- Study startJan 2011
- Primary completionOct 2011
- Study completionOct 2011
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Collagen Type-4 NephropathiesStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
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
- Case only
- Time perspective
- Retrospective
- Enrolment
- 19 participants (actual)
Sponsor and investigators
- Lead sponsor
- University of Sao Paulo
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Maria Helena Vaisbich, University of Sao Paulo
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT01465126
- Sponsor's protocol ID
- Registry Identifier
- Status last verified
- Nov 2011
- First submitted
- 27 Oct 2011
- Last updated
- 4 Nov 2011
- Results posted
- No
- Data monitoring committee
- No
Study at a glance
From the registry record, last updated by the sponsor on 4 Nov 2011. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Collagen Type 4-related Nephropathies: From Alport to Thin Membrane Nephropathy. A Series of Cases Treated With Angiotensin Converting Enzyme Inhibitor
- ClinicalTrials.gov ID
- NCT01465126
- Acronym / sponsor ID
- Registry Identifier
- Conditions
- Collagen Type-4 Nephropathies
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 19 participants (actual)
- Lead sponsor
- University of Sao PauloUniversity, hospital or other
- Study start
- Jan 2011
- Primary completion
- Oct 2011 (actual)
- Study completion
- Oct 2011 (actual)
- First posted
- 4 Nov 2011 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Background: Collagen IV-related nephropathies can lead to End Stage Renal Disease. Experimental studies have shown renin angiotensin aldosterone system blockade can reduce proteinuria and preserve renal function. In humans there is no proven treatment. Methods: This is a retrospective study of patients with Collagen IV-related nephropathies and proteinuria treated with enalapril analyzing the evolution of proteinuria and renal function, as well as predictive variables of progression to end stage renal disease. Outcome was creatinine clearance < 60 ml/min/1.73m2.
Detailed description
Introduction Collagen IV-related nephropathies, caused by mutations in the three genes encoding collagen type IV of the basal membrane, represent a spectrum of phenotypes from Alport syndrome (AS) to thin basement membrane nephropathy (TBMN) (1). Subtypes are X-linked AS (XLAS) which corresponds approximately 80% of AS, autosomal recessive AS (ARAS), counting for 15% of AS, and the autosomal dominant forms, represented by autosomal dominant AS (ADAS, 5% of AS) and TBMN, which is believed to be present in 1% of the population (1).
Besides renal manifestations, these diseases can present cochlear and ocular abnormalities (2). However, the hallmark of Collagen IV-related nephropathies is hematuria. Proteinuria is detected during life, being a marker of disease progression. All males with XLAS develop proteinuria and, eventually, progressive renal insufficiency, which leads to end-stage renal disease (ESRD). Overall, an estimated 60% reach ESRD by age 30 years, and 90% by age 40 years (2). Approximately 12% of females with XLAS develop ESRD before age 40 years, increasing to 30% by age 60 years (3). Most individuals with ARAS develop significant proteinuria in late childhood or adolescence and ESRD before age 30 years. Progression to ESRD is slower in individuals with ADAS. Similarly, TBMN is characterized clinically by persistent microhematuria often observed in childhood. TBMN is rarely associated with extrarenal abnormalities and proteinuria. Hypertension and progression to ESRD are unusual (4).
Despite the severity of disease, the high rate of ESRD, and the increasing knowledge about genetics and diagnosis, there is currently no proven treatment to AS. So far, the therapeutic approach is limited to angiotensin-II (AII) blockade, blood pressure control and diet counseling. Angiotensin-converting enzyme inhibitors (ACEi) or angiotensin receptor blockers (ARB) are usually started once proteinuria appears but there is no clear evidence that such treatment alters the natural history of the disease in humans.
Our goal was to describe the evolution of a series of cases with Collagen IV-related nephropathies and proteinuria treated with enalapril, as well as predictive variables of progression to ESRD.
Patients and Methods This is a retrospective study of collagen IV-related nephropathies patients followed at Instituto da Criança - HCFMUSP from 1999 to 2010. All patients presented glomerular hematuria (erythrocyte dysmorphism and/or red blood cell cast in the urinary sediment) and proteinuria. In 16 of 19 cases the diagnosis was based on familial history and renal histology findings which showed negative immunofluorescence and the ultrastructural abnormalities of the glomerular basement membrane (GBM) showing TBMN (uniform or diffuse attenuation of the GBM without the typical lamellation and thickening that is seen in AS) or AS (defects in terms of alternating attenuation, splitting, lamellation, and thickening along the GBM). However, it is very difficult to discriminate between the initial stage of AS and TBMN. Three patients were not submitted to renal biopsy since the familial history and the renal histology of relatives were characteristics of the disease. Only adherent patients were included, which was based on presence in attendance and exams.
The patients visited the outpatient clinic at least once every 3 months and had at least 2 years of follow up. The following parameters were evaluated at baseline: age, renal function (serum creatinine, urea, and creatinine clearance according to Schwartz Formula) (5), 24 hour proteinuria, blood pressure and light and electron microscopy of the renal fragment.
In all patients, enalapril was employed as a RAAS blocker, observing benefits and side effects as hypotension symptoms and/or signs. Our protocol intends to reach a dose of 0.3 mg/kg/day.
The following parameters were also collected during follow up: serum creatinine and urea, 24 hour proteinuria and creatinine clearance estimated by stature (Schwartz Formula).
In this study hyperfiltration is defined as ≥ 145 ml/minute/1.73m2BS, based on Piepsz et al and Prestidge et al data (6,7).
Statistical analysis Mann-Whitney and chi-square (or Fisher) tests were used in the univariate analysis. For the analysis of the effect of enalapril on proteinuria during the first 2 years of treatment we have used a non-parametric repeated measures analysis (Friedmann´s test). We have analyzed the main predictive variables of CKD progression, by considering a creatinine clearance below 60 ml/min/1.73m2 as an outcome.
Study design
- Observational model
- Case only
- Time perspective
- Retrospective
Who may qualify
- Ages
- Up to 18 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
- Study population
- Patients with Collagen type 4 nephropathies and proteinuria followed in Pediatric Nephrology Unit of Instituto da Criança - HCFMUSP
Key inclusion criteria (2 listed)
- age under 18 years old
- non-adherent to the exams and evaluations
Key exclusion criteria (1 listed)
- creatinine clearance < 60 ml/minute/1.73m2BS
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
proteinuria
Time frame: two years
evaluate the proteinuria during two years of treatment with enalapril
1 secondary outcome
evaluate the creatinine clearance during treatment with enalapril
Time frame: two years
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 4 Nov 2011.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
Questions about this trial
What is this clinical trial studying?
An observational study of Collagen Type-4 Nephropathies, run by University of Sao Paulo.
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 2 inclusion and 1 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 4 Nov 2011. Status can change between updates, so confirm with the study contact before making plans.
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.
What does the primary outcome measure?
proteinuria (time frame: two years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
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 4 Nov 2011.