Fabry DiseaseNCT05698901
Biomarkers and Cardiac Imaging Diagnostic Assay for Monitoring Patients With Fabry Disease
An observational study of Fabry Disease, run by Mackay Memorial Hospital at 1 site in Taiwan.
Trial summary
Fabry disease (FD) is a rare X-linked lysosomal storage disorder caused by deficient activity of the enzyme α-Gal A resulting from mutations affecting the GLA gene. It is characterized by severe multi-systemic involvement that leads to major organ failure and premature death in affected men and in some women. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Fabry Disease
- What is being tested?
- Agalsidase beta
- How many people
- 150 participants
- Where
- 1 siteTaiwan
- Study dates
- 19 Sep 2023to 30 Sep 2027
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
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 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Diagnosed FD patients with cardiac manifestation will be included and classified into two group based on their treatment status: treatment naïve or treated. Treatment naïve patient will be assigned to group A; Treated patient will be assigned to group B. If patient from group A meet the treatment criteria and about to have ERT, he/she could be re-assigned to group B.
Who may be able to join
- 18 years or older
- Male or female with Fabry disease diagnosed
- Presence of any one of following abnormal criteria of either: 1) Cardio-specific Biomarker; 2) Abnormal elevated value of plasma Gb3 or Lyso-Gb3; 3) Electrocardiography (ECG); 4) Cardio-specific Image.
- Group A: ERT Treatment naïve Fabry patients
- Group B: Agalsidase beta (ERT) exposed or treated Fabry patients
- Willing and able to comply with the required clinic visits, study procedures and assessments
Who cannot join
- Patient who are unwilling to sign inform consent form
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Taiwan1 site, 1 recruiting
- Recruiting
Charles Jia-Yin Hou
Taipei
Charles Jia-Yin Hou, +886905960500, jiayinhou@gmail.com
About this study
Fabry disease (FD) is a rare X-linked lysosomal storage disorder caused by deficient activity of the enzyme α-Gal A resulting from mutations affecting the GLA gene.
It is characterized by severe multi-systemic involvement that leads to major organ failure and premature death in affected men and in some women. The α-Gal A deficiency results in progressive accumulation of un-degraded glycosphingolipids, predominantly globotriaosylceramide (Gb3), within cell lysosomes throughout the body.1
Read more
In patients at the fourth to fifth decade, left ventricular hypertrophy occur usually, and myocardial infarction and heart failure develops disease progress. Life-threatening renal, cardiac, and cerebrovascular diseases are added in later decades.2,3
Fabry disease is treatable with enzyme replacement therapy (ERT). Early recognition of symptoms and diagnosis of patients at a potentially reversible stage of the disease is therefore important. To date, plasma Lyso-Gb3 is useful in the diagnosis of Fabry disease. All male with classical Fabry disease could be discerned by an elevated plasma Lyso-GL-3; All adult female patients have elevated plasma Lyso-GL-3 above normal range.4 Other study also indicated that higher lyso-Gb3 concentrations at first visit were associated with a higher event rate in the past. Men with classical FD have higher Lyso-GL-3 values compared with patients with non-classical FD and women along with an increased risk of developing complications, more severe cardiac and renal disease.5
According to a publication from Taiwan society of cariology (TSOC) expert consensus, several cardiac biomarkers including N terminal pro B type natriuretic peptide (NT-proBNP) and cardiac troponin I/T (cTNI/cTNT) have been proposed to be alternative surrogate markers of cardiac involvement in FD.6However, there is no study to analyze the relationship between all these biomarkers including lyso-Gb3 and FD cardiac manifestation or improvement of cardiac damage outcomes under ERT yet.
There is a high prevalence of the cardiac variant (IVS4+919G→A) (~1 in 1600 males) of FD in Taiwan as revealed by newborn screening programs7,8 and patients with idiopathic HCM.9 FD patients with cardiac variant need to fulfill at least two indicators as stated in "cardiac function assessment indicators of Fabry's disease cardiac variant type" with cardiac biopsy confirmed GL3 or lyso-Gb3 lipid accumulation to get local reimbursement for treatment. Cardiac biopsy is an invasive and relative dangerous procedure that some patients would refuse to take this procedure and could not get local reimbursement resulting in delay in treatment.
Therefore in the present study the investigators are aiming to identify candidate biomarkers to establish a scoring algorithm for evaluating Fabry disease progression status or treatment response and the investigators could stage patient who with more correlated biomarkers at baseline would have higher risk to develop sever clinical outcome and initiate early therapy.
- Conditions
- Fabry Disease
- Being tested
- Agalsidase beta
- Keywords
- Fabry Disease, Disease progression, Cardiac biomarkers, Therapy response
- Medical subject headings
- Fabry Disease, Disease Progression
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Agalsidase betaDrug
The treatment is following local reimbursement criteria and judge by physician
| Study group | Role | What they receive |
|---|---|---|
| Group A | 1. 18 years or older 2. Male or female with Fabry disease diagnosed 3. Presence of any one of following abnormal criteria of either: 1) Cardio-specific Biomarker; 2) Abnormal elevated value of plasma Gb3 or Lyso-Gb3; 3) Electrocardiography (ECG); 4) Cardio-specific Image. 4. ERT Treatment naïve Fabry patients | |
| Group B | 1. 18 years or older
2. Male or female with Fabry disease diagnosed
3. Presence of any one of following abnormal criteria of either: 1) Cardio-specific Biomarker; 2) Abnormal elevated value of plasma Gb3 or Lyso-Gb3; 3) Electrocardiography (ECG); 4) Cardio-specific Image.
4. Agalsidase beta (ERT) exposed or treated Fabry patients Receives: Drug: Agalsidase beta |
What is being measured
The primary outcome is the main question the study is designed to answer.
To establish a comprehensive scoring algorithm to evaluate the disease progression status and potential indicators in response to treatment outcome mainly from imaging or biomarkers.
Measured: 3 years
Secondary outcomes (2)
(a)To figure out which biomarker and imaging data is statistically significant associated with disease progression status in patients without treatment.
Measured: 3 years
To further analyze and confirm from (a) that treatment outcomes (biomarkers/imaging parameters) of patient exposed to agalsidase beta therapy were statistically significant.
Measured: 3 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted26 Jan 2023
- Study start19 Sep 2023
- Primary completion30 Sep 2026 (estimated)
- Study completion30 Sep 2027 (estimated)
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.
- 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
- Cohort
- Time perspective
- Other
- Enrolment
- 150 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Mackay Memorial Hospital
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Charles Jia-Yin Hou, Mackay Memorial Hospital
- Investigators
- Charles Jia-Yin Hou, Study chair, Mackay Memorial Hospital
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05698901
- Sponsor's protocol ID
- 22CT026be
- Status last verified
- Nov 2023
- First submitted
- 16 Jan 2023
- Last updated
- 18 Nov 2023
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- Yes
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 18 Nov 2023. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Biomarkers and Cardiac Imaging Diagnostic Assay for Monitoring Patients With Fabry Disease
- ClinicalTrials.gov ID
- NCT05698901
- Acronym / sponsor ID
- 22CT026be
- Conditions
- Fabry Disease
- Keywords
- Fabry Disease, Disease progression, Cardiac biomarkers, Therapy response
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 150 participants (estimated)
- Lead sponsor
- Mackay Memorial HospitalUniversity, hospital or other
- Study start
- 19 Sep 2023 (actual)
- Primary completion
- 30 Sep 2026 (estimated)
- Study completion
- 30 Sep 2027 (estimated)
- First posted
- 26 Jan 2023 (actual)
- 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 (FD) is a rare X-linked lysosomal storage disorder caused by deficient activity of the enzyme α-Gal A resulting from mutations affecting the GLA gene.
It is characterized by severe multi-systemic involvement that leads to major organ failure and premature death in affected men and in some women. The α-Gal A deficiency results in progressive accumulation of un-degraded glycosphingolipids, predominantly globotriaosylceramide (Gb3), within cell lysosomes throughout the body.1
In patients at the fourth to fifth decade, left ventricular hypertrophy occur usually, and myocardial infarction and heart failure develops disease progress. Life-threatening renal, cardiac, and cerebrovascular diseases are added in later decades.2,3
Fabry disease is treatable with enzyme replacement therapy (ERT). Early recognition of symptoms and diagnosis of patients at a potentially reversible stage of the disease is therefore important. To date, plasma Lyso-Gb3 is useful in the diagnosis of Fabry disease. All male with classical Fabry disease could be discerned by an elevated plasma Lyso-GL-3; All adult female patients have elevated plasma Lyso-GL-3 above normal range.4 Other study also indicated that higher lyso-Gb3 concentrations at first visit were associated with a higher event rate in the past. Men with classical FD have higher Lyso-GL-3 values compared with patients with non-classical FD and women along with an increased risk of developing complications, more severe cardiac and renal disease.5
According to a publication from Taiwan society of cariology (TSOC) expert consensus, several cardiac biomarkers including N terminal pro B type natriuretic peptide (NT-proBNP) and cardiac troponin I/T (cTNI/cTNT) have been proposed to be alternative surrogate markers of cardiac involvement in FD.6However, there is no study to analyze the relationship between all these biomarkers including lyso-Gb3 and FD cardiac manifestation or improvement of cardiac damage outcomes under ERT yet.
There is a high prevalence of the cardiac variant (IVS4+919G→A) (~1 in 1600 males) of FD in Taiwan as revealed by newborn screening programs7,8 and patients with idiopathic HCM.9 FD patients with cardiac variant need to fulfill at least two indicators as stated in "cardiac function assessment indicators of Fabry's disease cardiac variant type" with cardiac biopsy confirmed GL3 or lyso-Gb3 lipid accumulation to get local reimbursement for treatment. Cardiac biopsy is an invasive and relative dangerous procedure that some patients would refuse to take this procedure and could not get local reimbursement resulting in delay in treatment.
Therefore in the present study the investigators are aiming to identify candidate biomarkers to establish a scoring algorithm for evaluating Fabry disease progression status or treatment response and the investigators could stage patient who with more correlated biomarkers at baseline would have higher risk to develop sever clinical outcome and initiate early therapy.
Study design
- Observational model
- Cohort
- Time perspective
- Other
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Group A | – | –1. 18 years or older 2. Male or female with Fabry disease diagnosed 3. Presence of any one of following abnormal criteria of either: 1) Cardio-specific Biomarker; 2) Abnormal elevated value of plasma Gb3 or Lyso-Gb3; 3) Electrocardiography (ECG); 4) Cardio-specific Image. 4. ERT Treatment naïve Fabry patients |
| Group B | – | Drug: Agalsidase beta1. 18 years or older 2. Male or female with Fabry disease diagnosed 3. Presence of any one of following abnormal criteria of either: 1) Cardio-specific Biomarker; 2) Abnormal elevated value of plasma Gb3 or Lyso-Gb3; 3) Electrocardiography (ECG); 4) Cardio-specific Image. 4. Agalsidase beta (ERT) exposed or treated Fabry patients |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Diagnosed FD patients with cardiac manifestation will be included and classified into two group based on their treatment status: treatment naïve or treated. Treatment naïve patient will be assigned to group A; Treated patient will be assigned to group B. If patient from group A meet the treatment criteria and about to have ERT, he/she could be re-assigned to group B.
Key inclusion criteria (6 listed)
- 18 years or older
- Male or female with Fabry disease diagnosed
- Presence of any one of following abnormal criteria of either: 1) Cardio-specific Biomarker; 2) Abnormal elevated value of plasma Gb3 or Lyso-Gb3; 3) Electrocardiography (ECG); 4) Cardio-specific Image.
- Group A: ERT Treatment naïve Fabry patients
- Group B: Agalsidase beta (ERT) exposed or treated Fabry patients
Key exclusion criteria (1 listed)
- Patient who are unwilling to sign inform consent form
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 |
|---|---|---|
| Agalsidase betaThe treatment is following local reimbursement criteria and judge by physician | Drug | Group B |
Primary outcome
To establish a comprehensive scoring algorithm to evaluate the disease progression status and potential indicators in response to treatment outcome mainly from imaging or biomarkers.
Time frame: 3 years
2 secondary outcomes
(a)To figure out which biomarker and imaging data is statistically significant associated with disease progression status in patients without treatment.
Time frame: 3 years
To further analyze and confirm from (a) that treatment outcomes (biomarkers/imaging parameters) of patient exposed to agalsidase beta therapy were statistically significant.
Time frame: 3 years
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 18 Nov 2023.
- Individual participant dataSharing planned: Undecided
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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.
Charles Jia-Yin Hou study chair
Mackay Memorial Hospital
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 Mackay Memorial Hospital at 1 site in Taiwan.
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 6 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: looking for participants now, as of the sponsor's last update on 18 Nov 2023. 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 Taiwan. 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?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Charles Jia-Yin Hou (+886905960500, jiayinhou@gmail.com), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
To establish a comprehensive scoring algorithm to evaluate the disease progression status and potential indicators in response to treatment outcome mainly from imaging or biomarkers. (time frame: 3 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 18 Nov 2023.