Fabry DiseaseNCT00149318
Enzyme Replacement Therapy in Fabry Disease
An observational study of Fabry Disease, run by Mario Negri Institute for Pharmacological Research at 1 site in Italy.
Trial summary
Fabry disease is an X-linked rare metabolic disease, caused by a deficient activity of the hydrolase α-Galactosidase A, and characterized by a progressive and systematic deposition of glycosphingolipids in many organs. The disease is most severe in affected males. Read more about this study
- Who is it for?
- Ages 16 to 65 years
- Conditions the study is for
- Fabry Disease
- What is being tested?
- Biochemical analyses.
- How many people
- 2 participants
- Where
- 1 siteItaly
- Study dates
- Dec 2002to Nov 2014
- 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 16 to 65 years
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Patients with Fabry disease.
Who may be able to join
- age ≥ 16 years and ≤ 65 years
- clinical diagnosis of Fabry disease, confirmed by α-galactosidase A assay and detection of mutation in α-GalA gene
- serum creatinine ≥ 1.4 mg/dl (females) and ≥ 1.6 mg/dl (males) and/or proteinuria ≥ 0.4 g/24h
- written informed consent
Who cannot join
- any clinically relevant condition that may affect study participation and/or study results
- inability to fully understand the purpose and the risks of the study
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Evaluation of the Long Term Efficacy of Enzyme Replacement Therapy in Fabry Disease
Fabry disease is an X-linked rare metabolic disease, caused by a deficient activity of the hydrolase α-Galactosidase A, and characterized by a progressive and systematic deposition of glycosphingolipids in many organs.
The disease is most severe in affected males. In the classic form (where the enzyme activity is absent) the clinical findings are represented by pain and paresthesias in the extremities, vessel ectasia (called angiokeratoma) in skin and mucous membranes, and hypohidrosis (a reduced sweating) during childhood or adolescence. Corneal and lenticular opacities may be present. Proteinuria, renal impairment,cardiac and neurological lesions develop with time, together with hypertension. When end stage renal disease occurs, dialysis or renal transplantation may be necessary. In heterozygous females a residual enzymatic activity may be demonstrated and they usually have asymptomatic or later onset disease manifestations, although rarely they could develop a disease as severe as in males.
Read more
A cardiac and a renal variant, where the heart and kidney are the only organs involved by the disease have been described too.
The recombinant human α-galactosidase A is now available for patients. Infusions of the enzyme replacement treatment have been demonstrated to be safe and effective. This study wants to evaluate the long term efficacy of enzyme replacement therapy in patients with Fabry disease and renal involvement.
Clinical period evaluations together with a genetic counselling will be offered to each patient.
Read the detailed description
INTRODUCTION Fabry disease is an X-linked error of glycosphingolipid catabolism caused by the deficient activity of the lysosomal hydrolase α-galactosidase A (α-gal A) in tissues and fluids of affected hemizygous males; most heterozygous females have an intermediate level of enzymatic activity. The enzymatic defect leads to a systemic deposition of glycosphingolipids, predominantly globotriaosylceramide (Gb3), in body fluids and in the lysosomes of endothelial, perithelial, and smooth-muscle cells of blood vessels. Deposition also occurs in ganglion cells.
Clinical manifestations in classically affected hemizygotes (with absent α-gal A activity), include pain and paresthesias in the extremities, vessel ectasia (angiokeratoma) in skin and mucous membranes, and hypohidrosis during childhood or adolescence. Corneal and lenticular opacities are early findings. With increasing age, proteinuria and renal impairment lead to hypertension and uremia. Renal failure typically occurs in the third-fifth decades of life, and these patients need chronic hemodialysis and/or renal transplantation.
Atypical hemizygotes with residual α-gal A activity may be asymptomatic or have late-onset, mild disease manifestations primarily limited to the heart (the "cardiac variant"). Recently a renal variant has been identified too. Heterozygous females may have an attenuated form of the disease.The most frequent clinical finding in females is the characteristic whorl-like corneal epithelial dystrophy. They usually are asymptomatic, although rarely can be severely affected as hemizygous males.
In the kidney accumulation of glycosphingolipids appear in the sequence in endothelial and epithelial cells of the glomerulus and of Bowman's space, epithelium of the loops of Henle and in distal tubules till proximal tubules, interstitial histiocytes and fibrocytes. Lipid-laden distal tubular epithelial cells desquamate and may be detected in the urinary sediment.
Renal blood vessels may be involved progressively and extensively. An early finding is arterial fibrinoid deposits. Other histologic renal findings are severe arteriolar sclerosis, glomerular atrophy and fibrosis, pseudotubular proliferation of residual glomerular epithelium, tubular atrophy and diffuse interstitial fibrosis. Preliminary studies of enzyme replacement therapy demonstrate that periodic infusions of recombinant human α-galactosidase A are safe and effective in patients with Fabry disease.
The purpose of this study is to evaluate the long term efficacy of enzyme replacement therapy in patients with Fabry disease and renal involvement.
AIM Primary
- To evaluate the effect of enzyme replacement therapy on the rate of decline in the glomerular filtration rate (GFR, measured by inulin clearance) in Fabry patients with renal involvement
- To evaluate the biological activity of recombinant human galactosidase in terms of clearance of plasma Gb3 (that is directly correlated with renal endothelial glycosphingolipid clearance) Secondary
To evaluate the effect of enzyme replacement therapy on:
- 24-hour urinary protein excretion
- renal plasma flow (PAH renal clearance)
- glomerular perm-selectivity (fractional dextran clearances)
- end stage renal failure, kidney transplantation or death
- systolic and diastolic blood pressure
- cardiac anomalies (left ventricular hypertrophy, arrhythmias, conduction anomalies)
- cutaneous anomalies
- ocular anomalies DESIGN Twenty patients (males and females) with Fabry disease, and renal involvement, referred to the SMIMAF - Studio Multicentrico Italiano sulla Malattia di Anderson-Fabry - will be enrolled in the study.
- Conditions
- Fabry Disease
- Being tested
- Biochemical analyses.
- Medical subject headings
- Fabry Disease
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Biochemical analyses.Other
Biochemical analyses.
| Study group | Role | What they receive |
|---|---|---|
| Patients with Fabry disease | Not described Receives: Other: Biochemical analyses. |
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted8 Sep 2005 (estimated)
- Study startDec 2002
- Primary completionOct 2008
- Study completionNov 2014
Why it stopped: Difficulties in the patient's enrolment
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Fabry DiseaseStudies of the same condition, open and under way.
- More trials run by Mario Negri Institute for Pharmacological ResearchThe sponsor's other registered studies.
- 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
- Prospective
- Enrolment
- 2 participants (actual)
Sponsor and investigators
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Erica Daina, MD, Principal investigator, Mario Negri Institute
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00149318
- Sponsor's protocol ID
- FABRY DISEASE
- Status last verified
- Nov 2014
- First submitted
- 6 Sep 2005
- Last updated
- 10 Nov 2014
- Results posted
- No
- Data monitoring committee
- No
Study at a glance
From the registry record, last updated by the sponsor on 10 Nov 2014. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Evaluation of the Long Term Efficacy of Enzyme Replacement Therapy in Fabry Disease
- ClinicalTrials.gov ID
- NCT00149318
- Acronym / sponsor ID
- FABRY DISEASE
- Conditions
- Fabry Disease
- Study type
- Observational
- Recruitment status
- TerminatedReason stopped: Difficulties in the patient's enrolment
- Enrolment
- 2 participants (actual)
- Lead sponsor
- Mario Negri Institute for Pharmacological ResearchUniversity, hospital or other
- Study start
- Dec 2002
- Primary completion
- Oct 2008 (actual)
- Study completion
- Nov 2014 (actual)
- First posted
- 8 Sep 2005 (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.
Fabry disease is an X-linked rare metabolic disease, caused by a deficient activity of the hydrolase α-Galactosidase A, and characterized by a progressive and systematic deposition of glycosphingolipids in many organs.
The disease is most severe in affected males. In the classic form (where the enzyme activity is absent) the clinical findings are represented by pain and paresthesias in the extremities, vessel ectasia (called angiokeratoma) in skin and mucous membranes, and hypohidrosis (a reduced sweating) during childhood or adolescence. Corneal and lenticular opacities may be present. Proteinuria, renal impairment,cardiac and neurological lesions develop with time, together with hypertension. When end stage renal disease occurs, dialysis or renal transplantation may be necessary. In heterozygous females a residual enzymatic activity may be demonstrated and they usually have asymptomatic or later onset disease manifestations, although rarely they could develop a disease as severe as in males.
A cardiac and a renal variant, where the heart and kidney are the only organs involved by the disease have been described too.
The recombinant human α-galactosidase A is now available for patients. Infusions of the enzyme replacement treatment have been demonstrated to be safe and effective. This study wants to evaluate the long term efficacy of enzyme replacement therapy in patients with Fabry disease and renal involvement.
Clinical period evaluations together with a genetic counselling will be offered to each patient.
Detailed description
INTRODUCTION Fabry disease is an X-linked error of glycosphingolipid catabolism caused by the deficient activity of the lysosomal hydrolase α-galactosidase A (α-gal A) in tissues and fluids of affected hemizygous males; most heterozygous females have an intermediate level of enzymatic activity. The enzymatic defect leads to a systemic deposition of glycosphingolipids, predominantly globotriaosylceramide (Gb3), in body fluids and in the lysosomes of endothelial, perithelial, and smooth-muscle cells of blood vessels. Deposition also occurs in ganglion cells.
Clinical manifestations in classically affected hemizygotes (with absent α-gal A activity), include pain and paresthesias in the extremities, vessel ectasia (angiokeratoma) in skin and mucous membranes, and hypohidrosis during childhood or adolescence. Corneal and lenticular opacities are early findings. With increasing age, proteinuria and renal impairment lead to hypertension and uremia. Renal failure typically occurs in the third-fifth decades of life, and these patients need chronic hemodialysis and/or renal transplantation.
Atypical hemizygotes with residual α-gal A activity may be asymptomatic or have late-onset, mild disease manifestations primarily limited to the heart (the "cardiac variant"). Recently a renal variant has been identified too. Heterozygous females may have an attenuated form of the disease.The most frequent clinical finding in females is the characteristic whorl-like corneal epithelial dystrophy. They usually are asymptomatic, although rarely can be severely affected as hemizygous males.
In the kidney accumulation of glycosphingolipids appear in the sequence in endothelial and epithelial cells of the glomerulus and of Bowman's space, epithelium of the loops of Henle and in distal tubules till proximal tubules, interstitial histiocytes and fibrocytes. Lipid-laden distal tubular epithelial cells desquamate and may be detected in the urinary sediment.
Renal blood vessels may be involved progressively and extensively. An early finding is arterial fibrinoid deposits. Other histologic renal findings are severe arteriolar sclerosis, glomerular atrophy and fibrosis, pseudotubular proliferation of residual glomerular epithelium, tubular atrophy and diffuse interstitial fibrosis. Preliminary studies of enzyme replacement therapy demonstrate that periodic infusions of recombinant human α-galactosidase A are safe and effective in patients with Fabry disease.
The purpose of this study is to evaluate the long term efficacy of enzyme replacement therapy in patients with Fabry disease and renal involvement.
AIM Primary
- To evaluate the effect of enzyme replacement therapy on the rate of decline in the glomerular filtration rate (GFR, measured by inulin clearance) in Fabry patients with renal involvement
- To evaluate the biological activity of recombinant human galactosidase in terms of clearance of plasma Gb3 (that is directly correlated with renal endothelial glycosphingolipid clearance) Secondary
To evaluate the effect of enzyme replacement therapy on:
- 24-hour urinary protein excretion
- renal plasma flow (PAH renal clearance)
- glomerular perm-selectivity (fractional dextran clearances)
- end stage renal failure, kidney transplantation or death
- systolic and diastolic blood pressure
- cardiac anomalies (left ventricular hypertrophy, arrhythmias, conduction anomalies)
- cutaneous anomalies
- ocular anomalies DESIGN Twenty patients (males and females) with Fabry disease, and renal involvement, referred to the SMIMAF - Studio Multicentrico Italiano sulla Malattia di Anderson-Fabry - will be enrolled in the study.
Study design
- Observational model
- Case only
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Patients with Fabry disease | – | Other: Biochemical analyses. |
Who may qualify
- Ages
- 16 to 65 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Patients with Fabry disease.
Key inclusion criteria (4 listed)
- age ≥ 16 years and ≤ 65 years
- clinical diagnosis of Fabry disease, confirmed by α-galactosidase A assay and detection of mutation in α-GalA gene
- serum creatinine ≥ 1.4 mg/dl (females) and ≥ 1.6 mg/dl (males) and/or proteinuria ≥ 0.4 g/24h
- written informed consent
Key exclusion criteria (2 listed)
- any clinically relevant condition that may affect study participation and/or study results
- inability to fully understand the purpose and the risks of the study
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Biochemical analyses.Biochemical analyses. | Other | Patients with Fabry disease |
Primary outcome
Not reported in the source record.
Results and safety
The study was stopped early (reason given: Difficulties in the patient's enrolment). Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 10 Nov 2014.
Related trials for Fabry Disease
RecruitingPhase 3
A Study to Learn How Well Lucerastat Works and How Safe it is in Untreated Adult Male Participants With Fabry Disease
Fabry Disease
RecruitingObservational study
A Study of Patients With Fabry Disease (US Specific)
Fabry Disease
RecruitingObservational study
A Global Prospective Observational Study of Women With Fabry Disease and Their Infants During Pregnancy and Breastfeeding
Fabry Disease
Active, not recruiting
Evaluation of the Effect of a Low-FODMAP Diet on Gastrointestinal Symptoms and Inflammatory Markers in Fabry Patients
Fabry Disease
RecruitingPhase 3
A Study of Migalastat in Pediatric Subjects (2 to <12 Yrs) With Fabry Disease and Amenable GLA Variants
Fabry Disease
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.
Erica Daina, MD principal investigator
Mario Negri Institute
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Fabry Disease, run by Mario Negri Institute for Pharmacological Research at 1 site 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 4 inclusion and 2 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: stopped early, as of the sponsor's last update on 10 Nov 2014. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site 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 was stopped early (reason given: Difficulties in the patient's enrolment). Results are not available in the source record.
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?
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 10 Nov 2014.