Fabry DiseaseRATIFYNCT06776419
the Role of cArdiac Inflammation, endoThelial Dysfunction, and FIbrosis in fabrY Disease
An observational study of Fabry Disease and Cardiovascular Diseases, run by Caroline Michaela Kistorp at 1 site in Denmark.
Trial summary
The overall objective of this study is to investigate Fabry-related cardiomyopathy and the use of native T1-mapping, coronary microvascular function, cardiac inflammation, and cardiac injury in an effort to improve the ability to detect disease. The study aims to achieve this by: 1. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Fabry Disease, Cardiovascular Diseases
- What is being tested?
- Cardiac Magnetic Ressonance Imaging and 82Rubidium-positron emission tomography and computer-tomography
- How many people
- 54 participants
- Where
- 1 siteDenmark
- Study dates
- 1 May 2025to 1 Jun 2031
- 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
- Healthy volunteers accepted
- Adult, Older adult
Study population: 1. Patients (adult) with genetically-verified diagnosis of Fabry disease. 2. Age- and sex-matched healthy controls.
Who may be able to join
- Male and female individuals with a genetically-verified diagnosis of Fabry disease
- ≥ 18 years of age
- Able to give informed consent
- ≥ 18 years of age
- Able to give informed consent
Who cannot join
- Any contraindication against a pharmacologically induced rest-stress PET/CT protocol according to local safety procedures such as acute coronary syndrome, severe bronchospasm, severe chronic obstructive pulmonary disease, cardiac arrhythmia.
- Any contraindication for MRI according to standard checklist used in clinical routine, including claustrophobia or metallic foreign bodies, metallic implants, internal electrical devices, or permanent makeup/tattoos that cannot be declared MR compatible.
- Pregnancy
- Age and sex-matched healthy controls (2)
- A genetically-verified diagnosis of Fabry disease.
- Family member to a patient with a genetically-verified diagnosis of Fabry disease
Show all 13Show fewer
- Cancer expected to influence life expectancy.
- Known heart failure, previous apoplexy or previously established kidney disease.
- Initiation or change of antihypertensive therapy within 3 months of enrollment.
- Known LVH as evaluated on echocardiography
- Any contraindication for a pharmacologically induced stress PET/CT protocol according to local safety procedures such as acute coronary syndrome, severe bronchospasm, severe chronic obstructive pulmonary disease, cardiac arrhythmia.
- Any contraindication for MRI according to standard checklist used in clinical routine, including claustrophobia or metallic foreign bodies, metallic implants, internal electrical devices, or permanent makeup/tattoos that cannot be declared MR compatible.
- Pregnancy
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Niels Høeg Brandt-Jacobsen, PhD, MD contact
Denmark1 site, 1 recruiting
- Recruiting
Rigshospitalet
Copenhagen, 2100
Caroline Kistorp, Professor, PhD, MD, 004535459642, caroline.michaela.kistorp@regionh.dk
Niels H Brandt-Jacobsen, MD, PhD, 004535458177, niels.hoeeg.brandt-jacobsen.01@regionh.dk
About this study
The overall objective of this study is to investigate Fabry-related cardiomyopathy and the use of native T1-mapping, coronary microvascular function, cardiac inflammation, and cardiac injury in an effort to improve the ability to detect disease. The study aims to achieve this by:
- Investigating the association between cardiac inflammation, fibrosis, and injury against the distribution and degree of microvascular disease in patients with Fabry disease with and without left ventricular hypertrophy (LVH) using cardiac magnetic resonance (CMR) imaging and 82Rubidium Positron emission tomography and computer tomography (82Rb-PET/CT).
- Using an extensive, in-depth biomarker blood panel to investigate the pathological pathways associated with Fabry disease and Fabry-related cardiomyopathy.
Read the detailed description
Fabry disease is a rare X-linked lysosomal disorder affecting 1:58,000 in the Danish population (males 1:85,000; females 1:44,000) [1]. A mutation in the gene encoding the enzyme alpha-gal A, an essential enzyme in normal lysosomal function, causes progressive cellular accumulation of the glycosphingolipids, especially globotriaosylceramide (Gb3). This leads to a severe disruption of cellular function. Men with a classic phenotype present with no or very low alpha-gal A-activity and develop early multi-organ involvement, especially renal and cardiac disease, resulting in a severely impaired prognosis [2]. However, both men and women can be affected in the presence of a disease-bearing mutation [2,3]. Females and men with a non-classic phenotype can also present with early organ involvement. However, their presentation is often more heterogeneous. While the classic male phenotype evidently need early initiation of therapy, the need of treatment is less clear in females and in males with a non-classic phenotype [3]. Furthermore, the incidence of new genetic variants of uncertain clinical significance, possibly indicating a Fabry diagnosis, has increased due to the general implementation of genetic screening programs [4-6]. At present, approximately 100 patients in Denmark are diagnosed with a disease-bearing mutation and followed at the Danish National Fabry Centre at Copenhagen University Hospital - Rigshospitalet. The continuing clinical challenge of who will need and when to initiate treatment necessitates close monitoring of patients at risk and, thus, a continued search for precise, reliable methods able to detect early cardiac involvement. Early initiation of therapy prior to the full manifestation of Fabry disease has shown to impede progression while evidence suggests a late initiation of treatment has reduced effects [7-10], further stressing the importance of early detection of Fabry cardiomyopathy and thus, early initiation of treatment.
Cardiomyopathy in Fabry disease In Fabry disease, the complication of greatest prognostic impact is cardiac manifestations, herein including arrhythmias, heart failure and cardiac death [2,3,11]. Although, the progressive deposition of Gb3 accounts for a maximum of 5% of total cardiac volume [12-14], a disproportionate cardiomyocyte hypertrophy, coronary wall thickening and endothelial dysfunction have been noted as general findings [12-14]. Indeed, left ventricular hypertrophy (LVH) has long been a hallmark of Fabry cardiomyopathy [15], however, the disproportionate relationship between a relatively small accumulation of Gb3 and the clinical cardiac manifestation of pronounced LVH has led to the proposal of the accumulation of Gb3 per se causes an early disruption of cellular function by pathways involving oxidative stress and inflammation [14-18]. The stress induced by Gb3 is believed to exacerbate left ventricular mass increase, cellular apoptosis, and cause the irreversible substitution of functioning tissue with reparative fibrosis. A key site and mechanism of stress and perhaps an early indicator of disease may, therefore, be found investigating changes across the vascular wall. Not only does Gb3 accumulation cause structural changes [12-14,19], Gb3 have been shown to induce the production of reactive oxygen species (ROS) through important inflammatory pathways such as transforming growth factor (TGF) β-dependent signaling, a key step in the Fabry-related vasculopathy preceding fibrosis [18]. The early structural changes in the endothelium might, therefore, tie directly to early and detrimental dysfunction [18,19].
Fabry-related cardiomyopathy and imaging As one of the most distinguishing factors of Fabry cardiomyopathy, the ability to accurately detect LVH is paramount. Recognizing the improved spatial resolution of CMR imaging, a shift from echocardiography to CMR has recently caused CMR to be recommended as part of routine clinical practice in supplement to echocardiography to improve detection of changes in left ventricular mass [15,20,21]. However, the addition of CMR-based approach has revealed several image-derived parameters of interest, which may provide insight into key aspects of the underlying mechanisms of Fabry disease, such as Gb3 accumulation, changes in fibrotic burden, and inflammation in the early stages of disease [15]. In general, Fabry cardiomyopathy often presents with low native T1 values irrespective of the presence of LVH, which have been suggested as an indirect measure of Gb3 burden [15,16,22]. In comparison, reparative fibrosis increases T1-values [15,16,22]. Furthermore, increased T2-values could be an indirect measure of inflammation [15-17], and interestingly, T2-values have been shown to decrease in concert with decreases in left ventricular mass following enzyme replacement therapy (ERT) [16,21]. Despite its promise, the overall use of T1 and T2 mapping has, however, not yet been implemented in clinical practice.
In comparison, PET/CT-based imaging has shown promise by detecting early Fabry-related changes such as coronary microvascular disease (CMD), which by itself provides important prognostic information [23]. However, use is limited due to radiation. The detection of CMD can elucidate on the progression of vascular endothelial dysfunction and may even be a key step in detecting early disease. Not only is the degree of CMD associated with the degree of LVH [24-26], of note, CMD seem to precede changes in left ventricular mass, as signs of CMD have been found irrespective of sex or the presence of LVH [24-26], suggesting its use is instrumental in detecting the early steps of Fabry-related cardiomyopathy.
Heterogeneity and regional disease progression? In Fabry, the cardiac involvement is believed to progress diffusely throughout the myocardium, with symmetric LVH as a key finding. However, of note, previous reports show great regional heterogeneity in the measured T1- and T2-values as well as regional differences using strain analysis to detect functional decline [15-17,22]. Furthermore, low T1-values, believed to be a pathognomonic feature of Fabry-associated cardiomyopathy, has been proposed to increase and pseudo-normalize with disease progression and the development of fibrosis, making the ability to account for change over time especially important [16]. CMR and PET/CT separately provide global measures of fibrosis, inflammation, and microvascular function, therefore, the combination of modalities may explain the regional differences specific to the individual patien. A combined approach may therefore provide key insights into the pathology of Fabry-associated cardiomyopathy - especially important in distinguishing early and late-stage disease.
- Conditions
- Fabry Disease, Cardiovascular Diseases
- Being tested
- Cardiac Magnetic Ressonance Imaging, 82Rubidium-positron emission tomography and computer-tomography
- Keywords
- Hypertrophy, Inflammation; Myocardium, Fibrosis Myocardial, Endothelial dysfunction, Coronary Microcirculation
- Medical subject headings
- Fabry Disease, Cardiovascular Diseases, Hypertrophy, Myocarditis
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Cardiac Magnetic Ressonance ImagingDiagnostic test
Also called CMR
CMR-protocol with gadolinium contrast
82Rubidium-positron emission tomography and computer-tomographyDiagnostic test
Also called 82Rb-PET/CT
cardiac Rb-PET protocol
| Study group | Role | What they receive |
|---|---|---|
| Patients with Fabry Disease | Patients with a genetically verified diagnosis of Fabry disease, grouped by the presence of left ventricular hypertrophy Receives: Diagnostic Test: Cardiac Magnetic Ressonance Imaging; Diagnostic Test: 82Rubidium-positron emission tomography and computer-tomography | |
| Controls | Healthy age- and sex-matched controls Receives: Diagnostic Test: Cardiac Magnetic Ressonance Imaging; Diagnostic Test: 82Rubidium-positron emission tomography and computer-tomography |
What is being measured
The primary outcome is the main question the study is designed to answer.
Change in global myocardial flow reserve
A between-group difference in change in global myocardial flow reserve (MFR), evaluated by 82Rb-PET/CT, comparing Fabry patients with controls irrespective of the presence of LVH.
Measured: 3 year change
Change in global native T1
A between-group difference in change in global native T1 evaluated by MRI, comparing Fabry patients with controls irrespective of the presence of LVH.
Measured: 3 year change
Secondary outcomes (4)
Change in global myocardial flow reserve by group
A between-group difference in change in global myocardial flow reserve (MFR) evaluated by 82Rb-PET/CT, comparing Fabry patients with controls accounting for the presence of LVH.
Measured: 3 year change
Change in global T1 by group
A between-group difference in change in global native T1 evaluated by MRI, comparing Fabry patients with controls accounting for the presence of LVH.
Measured: 3 year change
Change in global T2 by group
A between-group difference in change in global T2 values evaluated by MRI, comparing Fabry patients with controls accounting for the presence of LVH
Measured: 3 year change
Change in global T2
A between-group difference in change in global T2 values evaluated by MRI, comparing Fabry patients with controls irrespective of the presence of LVH.
Measured: 3 year change
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted15 Jan 2025
- Study start1 May 2025 (estimated)
- Primary completion1 Dec 2030 (estimated)
- Study completion1 Jun 2031 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (27)Papers the sponsor has linked to this study.
- 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
- Case-control
- Time perspective
- Prospective
- Enrolment
- 54 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Caroline Michaela Kistorp
- Sponsor type
- University, hospital or other
- Collaborators
- Sanofi
- Responsible party
- Sponsor-investigator, Caroline Michaela Kistorp, Copenhagen University Hospital, Rigshospitalet
- Investigators
- Caroline Kistorp, Professor, Principal investigator, Copenhagen University Hospital, Rigshospitalet
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06776419
- Sponsor's protocol ID
- H-24052180
- Acronym
- RATIFY
- Status last verified
- Apr 2025
- First submitted
- 9 Jan 2025
- Last updated
- 8 Apr 2025
- Results posted
- No
- Data monitoring committee
- Yes
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No: Due to national legistlative restrictions, unrestricted access to individual participant data is not possible. However, data exchange will be possible upon reasonable request under the assurance of data-management in accordance with Danish law.
Publications
Effraimidis G, Rasmussen AK, Dunoe M, Hasholt LF, Wibrand F, Sorensen SS, Lund AM, Kober L, Bundgaard H, Yazdanfard PDW, Oturai P, Larsen VA, Fraga de Abreu VH, Enevoldsen LH, Kristensen T, Svenstrup K, Bille MB, Arif F, Mogensen M, Klokker M, Backer V, Kistorp C, Feldt-Rasmussen U. Systematic cascade screening in the Danish Fabry Disease Centre: 20 years of a national single-centre experience. PLoS One. 2022 Nov 16;17(11):e0277767. doi: 10.1371/journal.pone.0277767. eCollection 2022.
PubMed 36383556Waldek S, Patel MR, Banikazemi M, Lemay R, Lee P. Life expectancy and cause of death in males and females with Fabry disease: findings from the Fabry Registry. Genet Med. 2009 Nov;11(11):790-6. doi: 10.1097/GIM.0b013e3181bb05bb.
PubMed 19745746Wilcox WR, Oliveira JP, Hopkin RJ, Ortiz A, Banikazemi M, Feldt-Rasmussen U, Sims K, Waldek S, Pastores GM, Lee P, Eng CM, Marodi L, Stanford KE, Breunig F, Wanner C, Warnock DG, Lemay RM, Germain DP; Fabry Registry. Females with Fabry disease frequently have major organ involvement: lessons from the Fabry Registry. Mol Genet Metab. 2008 Feb;93(2):112-28. doi: 10.1016/j.ymgme.2007.09.013. Epub 2007 Nov 26.
PubMed 18037317Schiffmann R, Fuller M, Clarke LA, Aerts JM. Is it Fabry disease? Genet Med. 2016 Dec;18(12):1181-1185. doi: 10.1038/gim.2016.55. Epub 2016 May 19.
PubMed 27195818Sachdev B, Takenaka T, Teraguchi H, Tei C, Lee P, McKenna WJ, Elliott PM. Prevalence of Anderson-Fabry disease in male patients with late onset hypertrophic cardiomyopathy. Circulation. 2002 Mar 26;105(12):1407-11. doi: 10.1161/01.cir.0000012626.81324.38.
PubMed 11914245Monserrat L, Gimeno-Blanes JR, Marin F, Hermida-Prieto M, Garcia-Honrubia A, Perez I, Fernandez X, de Nicolas R, de la Morena G, Paya E, Yague J, Egido J. Prevalence of fabry disease in a cohort of 508 unrelated patients with hypertrophic cardiomyopathy. J Am Coll Cardiol. 2007 Dec 18;50(25):2399-403. doi: 10.1016/j.jacc.2007.06.062.
PubMed 18154965Weidemann F, Niemann M, Stork S, Breunig F, Beer M, Sommer C, Herrmann S, Ertl G, Wanner C. Long-term outcome of enzyme-replacement therapy in advanced Fabry disease: evidence for disease progression towards serious complications. J Intern Med. 2013 Oct;274(4):331-41. doi: 10.1111/joim.12077. Epub 2013 May 6.
PubMed 23586858Weidemann F, Niemann M, Breunig F, Herrmann S, Beer M, Stork S, Voelker W, Ertl G, Wanner C, Strotmann J. Long-term effects of enzyme replacement therapy on fabry cardiomyopathy: evidence for a better outcome with early treatment. Circulation. 2009 Feb 3;119(4):524-9. doi: 10.1161/CIRCULATIONAHA.108.794529. Epub 2009 Jan 19.
PubMed 19153271Pieroni M, Camporeale A, Della Bona R, Sabini A, Cosmi D, Magnolfi A, Bolognese L. Progression of Fabry cardiomyopathy despite enzyme replacement therapy. Circulation. 2013 Oct 8;128(15):1687-8. doi: 10.1161/CIRCULATIONAHA.113.002799. No abstract available.
PubMed 24100483Rombach SM, Smid BE, Bouwman MG, Linthorst GE, Dijkgraaf MG, Hollak CE. Long term enzyme replacement therapy for Fabry disease: effectiveness on kidney, heart and brain. Orphanet J Rare Dis. 2013 Mar 25;8:47. doi: 10.1186/1750-1172-8-47.
PubMed 23531228Patel V, O'Mahony C, Hughes D, Rahman MS, Coats C, Murphy E, Lachmann R, Mehta A, Elliott PM. Clinical and genetic predictors of major cardiac events in patients with Anderson-Fabry Disease. Heart. 2015 Jun;101(12):961-6. doi: 10.1136/heartjnl-2014-306782. Epub 2015 Feb 5.
PubMed 25655062Linhart A, Elliott PM. The heart in Anderson-Fabry disease and other lysosomal storage disorders. Heart. 2007 Apr;93(4):528-35. doi: 10.1136/hrt.2005.063818. No abstract available.
PubMed 17401074Yogasundaram H, Kim D, Oudit O, Thompson RB, Weidemann F, Oudit GY. Clinical Features, Diagnosis, and Management of Patients With Anderson-Fabry Cardiomyopathy. Can J Cardiol. 2017 Jul;33(7):883-897. doi: 10.1016/j.cjca.2017.04.015. Epub 2017 May 4.
PubMed 28668140Frustaci A, Chimenti C, Doheny D, Desnick RJ. Evolution of cardiac pathology in classic Fabry disease: Progressive cardiomyocyte enlargement leads to increased cell death and fibrosis, and correlates with severity of ventricular hypertrophy. Int J Cardiol. 2017 Dec 1;248:257-262. doi: 10.1016/j.ijcard.2017.06.079. Epub 2017 Jun 23.
PubMed 28688718Esposito R, Santoro C, Mandoli GE, Cuomo V, Sorrentino R, La Mura L, Pastore MC, Bandera F, D'Ascenzi F, Malagoli A, Benfari G, D'Andrea A, Cameli M. Cardiac Imaging in Anderson-Fabry Disease: Past, Present and Future. J Clin Med. 2021 May 6;10(9):1994. doi: 10.3390/jcm10091994.
PubMed 34066467
Study at a glance
From the registry record, last updated by the sponsor on 8 Apr 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- the Role of cArdiac Inflammation, endoThelial Dysfunction, and FIbrosis in fabrY Disease
- ClinicalTrials.gov ID
- NCT06776419
- Acronym / sponsor ID
- RATIFY / H-24052180
- Conditions
- Fabry Disease, Cardiovascular Diseases
- Keywords
- Hypertrophy, Inflammation; Myocardium, Fibrosis Myocardial, Endothelial dysfunction, Coronary Microcirculation
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 54 participants (estimated)
- Lead sponsor
- Caroline Michaela KistorpUniversity, hospital or other
- Collaborators
- Sanofi
- Study start
- 1 May 2025 (estimated)
- Primary completion
- 1 Dec 2030 (estimated)
- Study completion
- 1 Jun 2031 (estimated)
- First posted
- 15 Jan 2025 (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.
The overall objective of this study is to investigate Fabry-related cardiomyopathy and the use of native T1-mapping, coronary microvascular function, cardiac inflammation, and cardiac injury in an effort to improve the ability to detect disease. The study aims to achieve this by:
- Investigating the association between cardiac inflammation, fibrosis, and injury against the distribution and degree of microvascular disease in patients with Fabry disease with and without left ventricular hypertrophy (LVH) using cardiac magnetic resonance (CMR) imaging and 82Rubidium Positron emission tomography and computer tomography (82Rb-PET/CT).
- Using an extensive, in-depth biomarker blood panel to investigate the pathological pathways associated with Fabry disease and Fabry-related cardiomyopathy.
Detailed description
Fabry disease is a rare X-linked lysosomal disorder affecting 1:58,000 in the Danish population (males 1:85,000; females 1:44,000) [1]. A mutation in the gene encoding the enzyme alpha-gal A, an essential enzyme in normal lysosomal function, causes progressive cellular accumulation of the glycosphingolipids, especially globotriaosylceramide (Gb3). This leads to a severe disruption of cellular function. Men with a classic phenotype present with no or very low alpha-gal A-activity and develop early multi-organ involvement, especially renal and cardiac disease, resulting in a severely impaired prognosis [2]. However, both men and women can be affected in the presence of a disease-bearing mutation [2,3]. Females and men with a non-classic phenotype can also present with early organ involvement. However, their presentation is often more heterogeneous. While the classic male phenotype evidently need early initiation of therapy, the need of treatment is less clear in females and in males with a non-classic phenotype [3]. Furthermore, the incidence of new genetic variants of uncertain clinical significance, possibly indicating a Fabry diagnosis, has increased due to the general implementation of genetic screening programs [4-6]. At present, approximately 100 patients in Denmark are diagnosed with a disease-bearing mutation and followed at the Danish National Fabry Centre at Copenhagen University Hospital - Rigshospitalet. The continuing clinical challenge of who will need and when to initiate treatment necessitates close monitoring of patients at risk and, thus, a continued search for precise, reliable methods able to detect early cardiac involvement. Early initiation of therapy prior to the full manifestation of Fabry disease has shown to impede progression while evidence suggests a late initiation of treatment has reduced effects [7-10], further stressing the importance of early detection of Fabry cardiomyopathy and thus, early initiation of treatment.
Cardiomyopathy in Fabry disease In Fabry disease, the complication of greatest prognostic impact is cardiac manifestations, herein including arrhythmias, heart failure and cardiac death [2,3,11]. Although, the progressive deposition of Gb3 accounts for a maximum of 5% of total cardiac volume [12-14], a disproportionate cardiomyocyte hypertrophy, coronary wall thickening and endothelial dysfunction have been noted as general findings [12-14]. Indeed, left ventricular hypertrophy (LVH) has long been a hallmark of Fabry cardiomyopathy [15], however, the disproportionate relationship between a relatively small accumulation of Gb3 and the clinical cardiac manifestation of pronounced LVH has led to the proposal of the accumulation of Gb3 per se causes an early disruption of cellular function by pathways involving oxidative stress and inflammation [14-18]. The stress induced by Gb3 is believed to exacerbate left ventricular mass increase, cellular apoptosis, and cause the irreversible substitution of functioning tissue with reparative fibrosis. A key site and mechanism of stress and perhaps an early indicator of disease may, therefore, be found investigating changes across the vascular wall. Not only does Gb3 accumulation cause structural changes [12-14,19], Gb3 have been shown to induce the production of reactive oxygen species (ROS) through important inflammatory pathways such as transforming growth factor (TGF) β-dependent signaling, a key step in the Fabry-related vasculopathy preceding fibrosis [18]. The early structural changes in the endothelium might, therefore, tie directly to early and detrimental dysfunction [18,19].
Fabry-related cardiomyopathy and imaging As one of the most distinguishing factors of Fabry cardiomyopathy, the ability to accurately detect LVH is paramount. Recognizing the improved spatial resolution of CMR imaging, a shift from echocardiography to CMR has recently caused CMR to be recommended as part of routine clinical practice in supplement to echocardiography to improve detection of changes in left ventricular mass [15,20,21]. However, the addition of CMR-based approach has revealed several image-derived parameters of interest, which may provide insight into key aspects of the underlying mechanisms of Fabry disease, such as Gb3 accumulation, changes in fibrotic burden, and inflammation in the early stages of disease [15]. In general, Fabry cardiomyopathy often presents with low native T1 values irrespective of the presence of LVH, which have been suggested as an indirect measure of Gb3 burden [15,16,22]. In comparison, reparative fibrosis increases T1-values [15,16,22]. Furthermore, increased T2-values could be an indirect measure of inflammation [15-17], and interestingly, T2-values have been shown to decrease in concert with decreases in left ventricular mass following enzyme replacement therapy (ERT) [16,21]. Despite its promise, the overall use of T1 and T2 mapping has, however, not yet been implemented in clinical practice.
In comparison, PET/CT-based imaging has shown promise by detecting early Fabry-related changes such as coronary microvascular disease (CMD), which by itself provides important prognostic information [23]. However, use is limited due to radiation. The detection of CMD can elucidate on the progression of vascular endothelial dysfunction and may even be a key step in detecting early disease. Not only is the degree of CMD associated with the degree of LVH [24-26], of note, CMD seem to precede changes in left ventricular mass, as signs of CMD have been found irrespective of sex or the presence of LVH [24-26], suggesting its use is instrumental in detecting the early steps of Fabry-related cardiomyopathy.
Heterogeneity and regional disease progression? In Fabry, the cardiac involvement is believed to progress diffusely throughout the myocardium, with symmetric LVH as a key finding. However, of note, previous reports show great regional heterogeneity in the measured T1- and T2-values as well as regional differences using strain analysis to detect functional decline [15-17,22]. Furthermore, low T1-values, believed to be a pathognomonic feature of Fabry-associated cardiomyopathy, has been proposed to increase and pseudo-normalize with disease progression and the development of fibrosis, making the ability to account for change over time especially important [16]. CMR and PET/CT separately provide global measures of fibrosis, inflammation, and microvascular function, therefore, the combination of modalities may explain the regional differences specific to the individual patien. A combined approach may therefore provide key insights into the pathology of Fabry-associated cardiomyopathy - especially important in distinguishing early and late-stage disease.
Study design
- Observational model
- Case-control
- Time perspective
- Prospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Patients with Fabry Disease | – | Diagnostic Test: Cardiac Magnetic Ressonance Imaging, Diagnostic Test: 82Rubidium-positron emission tomography and computer-tomographyPatients with a genetically verified diagnosis of Fabry disease, grouped by the presence of left ventricular hypertrophy |
| Controls | – | Diagnostic Test: Cardiac Magnetic Ressonance Imaging, Diagnostic Test: 82Rubidium-positron emission tomography and computer-tomographyHealthy age- and sex-matched controls |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- Study population
- 1. Patients (adult) with genetically-verified diagnosis of Fabry disease. 2. Age- and sex-matched healthy controls.
Key inclusion criteria (5 listed)
- Male and female individuals with a genetically-verified diagnosis of Fabry disease
- ≥ 18 years of age
- Able to give informed consent
- ≥ 18 years of age
- Able to give informed consent
Key exclusion criteria (13 listed)
- Any contraindication against a pharmacologically induced rest-stress PET/CT protocol according to local safety procedures such as acute coronary syndrome, severe bronchospasm, severe chronic obstructive pulmonary disease, cardiac arrhythmia.
- Any contraindication for MRI according to standard checklist used in clinical routine, including claustrophobia or metallic foreign bodies, metallic implants, internal electrical devices, or permanent makeup/tattoos that cannot be declared MR compatible.
- Pregnancy
- Age and sex-matched healthy controls (2)
- A genetically-verified diagnosis of Fabry disease.
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 |
|---|---|---|
| Cardiac Magnetic Ressonance ImagingAlso: CMRCMR-protocol with gadolinium contrast | Diagnostic test | Controls, Patients with Fabry Disease |
| 82Rubidium-positron emission tomography and computer-tomographyAlso: 82Rb-PET/CTcardiac Rb-PET protocol | Diagnostic test | Controls, Patients with Fabry Disease |
Primary outcome
Change in global myocardial flow reserve
Time frame: 3 year change
A between-group difference in change in global myocardial flow reserve (MFR), evaluated by 82Rb-PET/CT, comparing Fabry patients with controls irrespective of the presence of LVH.
Change in global native T1
Time frame: 3 year change
A between-group difference in change in global native T1 evaluated by MRI, comparing Fabry patients with controls irrespective of the presence of LVH.
4 secondary outcomes
Change in global myocardial flow reserve by group
Time frame: 3 year change
Change in global T1 by group
Time frame: 3 year change
Change in global T2 by group
Time frame: 3 year change
Change in global T2
Time frame: 3 year change
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 8 Apr 2025.
- Background: PubMed 36383556Effraimidis G, Rasmussen AK, Dunoe M, Hasholt LF, Wibrand F, Sorensen SS, Lund AM, Kober L, Bundgaard H, Yazdanfard PDW, Oturai P, Larsen VA, Fraga de Abreu VH, Enevoldsen LH, Kristensen T, Svenstrup K, Bille MB, Arif F, Mogensen M, Klokker M, Backer V, Kistorp C, Feldt-Rasmussen U. Systematic cascade screening in the Danish Fabry Disease Centre: 20 years of a national single-centre experience. PLoS One. 2022 Nov 16;17(11):e0277767. doi: 10.1371/journal.pone.0277767. eCollection 2022.
- Background: PubMed 19745746Waldek S, Patel MR, Banikazemi M, Lemay R, Lee P. Life expectancy and cause of death in males and females with Fabry disease: findings from the Fabry Registry. Genet Med. 2009 Nov;11(11):790-6. doi: 10.1097/GIM.0b013e3181bb05bb.
- Background: PubMed 18037317Wilcox WR, Oliveira JP, Hopkin RJ, Ortiz A, Banikazemi M, Feldt-Rasmussen U, Sims K, Waldek S, Pastores GM, Lee P, Eng CM, Marodi L, Stanford KE, Breunig F, Wanner C, Warnock DG, Lemay RM, Germain DP; Fabry Registry. Females with Fabry disease frequently have major organ involvement: lessons from the Fabry Registry. Mol Genet Metab. 2008 Feb;93(2):112-28. doi: 10.1016/j.ymgme.2007.09.013. Epub 2007 Nov 26.
- Background: PubMed 27195818Schiffmann R, Fuller M, Clarke LA, Aerts JM. Is it Fabry disease? Genet Med. 2016 Dec;18(12):1181-1185. doi: 10.1038/gim.2016.55. Epub 2016 May 19.
- Background: PubMed 11914245Sachdev B, Takenaka T, Teraguchi H, Tei C, Lee P, McKenna WJ, Elliott PM. Prevalence of Anderson-Fabry disease in male patients with late onset hypertrophic cardiomyopathy. Circulation. 2002 Mar 26;105(12):1407-11. doi: 10.1161/01.cir.0000012626.81324.38.
- Background: PubMed 18154965Monserrat L, Gimeno-Blanes JR, Marin F, Hermida-Prieto M, Garcia-Honrubia A, Perez I, Fernandez X, de Nicolas R, de la Morena G, Paya E, Yague J, Egido J. Prevalence of fabry disease in a cohort of 508 unrelated patients with hypertrophic cardiomyopathy. J Am Coll Cardiol. 2007 Dec 18;50(25):2399-403. doi: 10.1016/j.jacc.2007.06.062.
- Background: PubMed 23586858Weidemann F, Niemann M, Stork S, Breunig F, Beer M, Sommer C, Herrmann S, Ertl G, Wanner C. Long-term outcome of enzyme-replacement therapy in advanced Fabry disease: evidence for disease progression towards serious complications. J Intern Med. 2013 Oct;274(4):331-41. doi: 10.1111/joim.12077. Epub 2013 May 6.
- Background: PubMed 19153271Weidemann F, Niemann M, Breunig F, Herrmann S, Beer M, Stork S, Voelker W, Ertl G, Wanner C, Strotmann J. Long-term effects of enzyme replacement therapy on fabry cardiomyopathy: evidence for a better outcome with early treatment. Circulation. 2009 Feb 3;119(4):524-9. doi: 10.1161/CIRCULATIONAHA.108.794529. Epub 2009 Jan 19.
- Background: PubMed 24100483Pieroni M, Camporeale A, Della Bona R, Sabini A, Cosmi D, Magnolfi A, Bolognese L. Progression of Fabry cardiomyopathy despite enzyme replacement therapy. Circulation. 2013 Oct 8;128(15):1687-8. doi: 10.1161/CIRCULATIONAHA.113.002799. No abstract available.
- Background: PubMed 23531228Rombach SM, Smid BE, Bouwman MG, Linthorst GE, Dijkgraaf MG, Hollak CE. Long term enzyme replacement therapy for Fabry disease: effectiveness on kidney, heart and brain. Orphanet J Rare Dis. 2013 Mar 25;8:47. doi: 10.1186/1750-1172-8-47.
- Background: PubMed 25655062Patel V, O'Mahony C, Hughes D, Rahman MS, Coats C, Murphy E, Lachmann R, Mehta A, Elliott PM. Clinical and genetic predictors of major cardiac events in patients with Anderson-Fabry Disease. Heart. 2015 Jun;101(12):961-6. doi: 10.1136/heartjnl-2014-306782. Epub 2015 Feb 5.
- Background: PubMed 17401074Linhart A, Elliott PM. The heart in Anderson-Fabry disease and other lysosomal storage disorders. Heart. 2007 Apr;93(4):528-35. doi: 10.1136/hrt.2005.063818. No abstract available.
- Individual participant dataSharing planned: No. Due to national legistlative restrictions, unrestricted access to individual participant data is not possible. However, data exchange will be possible upon reasonable request under the assurance of data-management in accordance with Danish law.
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.
Niels Høeg Brandt-Jacobsen, PhD, MD contact
Caroline Kistorp, Professor principal investigator
Copenhagen University Hospital, Rigshospitalet
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 and Cardiovascular Diseases, run by Caroline Michaela Kistorp at 1 site in Denmark.
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 5 inclusion and 13 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 8 Apr 2025. 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 Denmark. 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 Caroline Kistorp, Professor (35459642 ext. 0045, caroline.michaela.kistorp@regionh.dk), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Change in global myocardial flow reserve (time frame: 3 year change). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT06776419, which also lists 27 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 8 Apr 2025.