Muscular Dystrophy, DuchenneNCT05833633
Study of Genotype and Phenotype Characterization in Duchenne Muscular Dystrophy With Small Mutations
An observational study of Muscular Dystrophy, Duchenne, run by Fondazione Policlinico Universitario Agostino Gemelli IRCCS at 1 site in Italy.
Trial summary
Improved standards of care and the regular early use of glucocorticoid treatment have changed the natural history of Duchenne muscular dystrophy (DMD), affecting both survival and time of loss of functional milestones. Read more about this study
- Who is it for?
- Ages 4 to 30 years, men only
- Conditions the study is for
- Muscular Dystrophy, Duchenne
- What is being tested?
- MUSCLE MAGNETIC RESONANCE IMAGING (MRI)
- How many people
- 17 participants
- Where
- 1 siteItaly
- Study dates
- 18 Mar 2022to 30 Jun 2025
- 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 4 to 30 years
- Men only
- No healthy volunteers
- Child, Adult
Study population: All 25 patients had genetically proven DMD diagnosis with a small mutation genotype; the sample includes both ambulant and non ambulant patients; Ten patients of the 25 are in treatment with Atarulen.
Who may be able to join
- DMD diagnosis confirming a small mutation genotype.
Who cannot join
- DMD patient enrolled in other clinical trials using genetic approach
- impossibility to perform MRI without sedation
- presence of severe cognitive or behavioral problems
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Study of Genotype and Phenotype Characterization and Biomarkers Profile in Duchenne Muscular Dystrophy With Small Mutations
Improved standards of care and the regular early use of glucocorticoid treatment have changed the natural history of Duchenne muscular dystrophy (DMD), affecting both survival and time of loss of functional milestones. More recently, there has been increasing evidence of an additional benefit from new therapeutic approaches based on mechanisms targeting specific types of mutation, as Atarulen, authorised in the European Union as Translarna since 31 July 2014 to treat DMD boys with non sense mutations. As there is increasing evidence that specific groups of mutations may have different progression of the disease, it has become mandatory to obtain more detailed long-term information about the patterns of progression related to different genotypes. Natural history of DMD boys carrying deletions has been more studied and less is known about boys carrying small mutations that represent 20% of DMD patients. The aim of this project is to better define the natural history of these patients and to better understand the clinical response to mutation-specific therapies aimed at restoring dystrophin protein production.
Read the detailed description
In the last years, motor functional assessments have helped to define a better natural history of DMD patients, showing different clustering of disease progression according to the genotype and locus of mutation. Within the spectrum of severity of DMD, variability in phenotype among deletions has been previously reported. However all clinical assessments have the common disadvantage of being dependent on patient collaboration and interaction with the examiner. Therefore, the need to identify new biomarkers as measurable indicators of biologic condition has become important. To date several studies have shown that Magnetic Resonance Imaging (MRI) and spectroscopy provide sensitive markers of muscle pathology and disease progression in both upper and lower limbs of DMD subjects, suggesting MRI as a promising non-invasive candidate biomarker. Muscle MRI has the advantage of being relatively independent of patient collaboration. In previous studies, quantitative thigh muscle MRI values highly correlated with clinical outcome measures and loss of ambulation (LOA) and qualitative assessment scoring showed a direct correlation with the the duration of illness and fibro-fatty changes. More recently, our team found a relation between the functional scores and severe involvement on muscle MRI of upper limb in both ambulant and non-ambulant DMD boys. Furthermore, in the last decades the evidence that the age of LOA varies between DMD individuals carrying mutations abolishing dystrophin expression, has suggested the existence of trans-acting variants in modifier genes. It has been recently reported that some single nucleotide polymorphisms (SNPs) in a few identified genes can be considered as DMD modifiers and responsible for some of the inter-individual variability observed in the clinical disease course. To date, variants in five loci have been associated with variability in human DMD sub-phenotypes: Secreted Phosphoprotein 1 (SPP1), Latent Transforming Growth Factor-Beta Binding Protein 4 (LTBP4), Cluster of differentiation 40 (CD40), alfa-actinin-3 (ACTN3), and Thrombospondin 1 (THBS1). These genes are implicated in several interconnected molecular pathways regulating inflammatory response to muscle damage, regeneration, fibrosis or are more directly implicated in muscle power and sprint performance. Described variants have a regulatory function or alter protein sequence and could delay median LOA by approximately 1 to 2 years. Furthermore, more recently, native urine derived stem cells were demonstrated to express dystrophin transcript and protein (following myoblast determination protein 1 (MyoD) differentiation) in both DMD patients and control group and they could be considered a valid cell tool for either genotype characterization and functional studies on both DMD transcript and dystrophin (DYS) protein. So far, the results of the literature on small mutations report a wide variability of clinical findings and it could be hypothesized that the variable trajectories of progression and the overall severity and loss of important milestones may depend by several factors. One could assume that this finding could be related to the different site of mutations and specific exon involvement or to the type of the aminoacidic changes that could be able to produce different expressions of residual protein with subsequent differences in the severity of phenotypes. These points have not been systematically explored and the use of biomarkers may facilitate to identify distinct phenotypes and their correlation with different genotypes. This project aims to investigate whether specific genotype characterization, functional assessments, muscle MRI could help to establish a better genotype and phenotype characterization in a group of DMD patients carrying small mutations. I hypothesize that these tools alone or combined may help to allow describing the natural history.
- Conditions
- Muscular Dystrophy, Duchenne
- Being tested
- MUSCLE MAGNETIC RESONANCE IMAGING (MRI)
- Medical subject headings
- Muscular Dystrophy, Duchenne
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
MUSCLE MAGNETIC RESONANCE IMAGING (MRI)Diagnostic test
Also called Genetic exams, Functional motor and respiratory assessments
To assess longitudinally at baseline and 1 year later changes on muscle MRI, genetic test, functional motor and respiratory assessments in the DMD group with different type of small mutations and the DMD group with non sense mutations treated with Atarulen in order to better define natural history of these patients. .
| Study group | Role | What they receive |
|---|---|---|
| Group of DMD patients with different type of small mutations (Group 1) | Group of DMD patients with different type of small mutations (15 ambulant or not-ambulant patients) Receives: Diagnostic Test: MUSCLE MAGNETIC RESONANCE IMAGING (MRI) | |
| Group of DMD patients with non sense mutations in treatment with Traslarna (Group 2) | Group of 10 ambulant DMD patients with non sense mutations in treatment with Traslarna (3-[5-(2-fluoro-phenyl)-[1,2,4]oxadiazole-3-yl]-benzoic acid). Receives: Diagnostic Test: MUSCLE MAGNETIC RESONANCE IMAGING (MRI) |
What is being measured
The primary outcome is the main question the study is designed to answer.
Longitudinal Motor changes in 15 DMD boys with different types of small mutations (Group 1)
To found in a cohort of 15 patients with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in motor functional assessments including the six minute walking test and the Performance of the Upper Limb.
Measured: 1 year
Longitudinal respiratory changes in 15 DMD boys with different types of small mutations (Group 1)
To found in the same cohort of 15 patients with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in respiratory data using the Peak Expiratory Flow percentage predicted.
,
Measured: 1 year
Longitudinal Muscle MRI changes in 15 DMD boys with different types of small mutations (Group 1)
To found in the same cohort of 15 patients with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in muscle MRI scores
Measured: 1 year
Longitudinal genetic changes in 15 DMD boys with different types of small mutations (Group 1)
To found in the same cohort of 15 patients (prospective cohort) with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in genetic test (urinary stem cells for MiRNA study).
Genomic DNA exploring the 5 SNPs associated to the LOA will be collected at T0 only
Measured: 1 year
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted27 Apr 2023
- Study start18 Mar 2022
- Primary completion30 Apr 2025
- Study completion30 Jun 2025
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Muscular Dystrophy, DuchenneStudies of the same condition, open and under way.
- More trials run by Fondazione Policlinico Universitario Agostino Gemelli IRCCSThe 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
- Cohort
- Time perspective
- Prospective
- Enrolment
- 17 participants (actual)
Sponsor and investigators
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Brogna Claudia, Fondazione Policlinico Universitario Agostino Gemelli IRCCS
- Investigators
- CLAUDIA BROGNA, MD, PhD, Principal investigator, Fondazione Policlinico Gemelli., IRCCS, Rome, Italy
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05833633
- Sponsor's protocol ID
- 3791
- Status last verified
- Jul 2026
- First submitted
- 6 Mar 2023
- Last updated
- 3 Aug 2026
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 3 Aug 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Study of Genotype and Phenotype Characterization and Biomarkers Profile in Duchenne Muscular Dystrophy With Small Mutations
- ClinicalTrials.gov ID
- NCT05833633
- Acronym / sponsor ID
- 3791
- Conditions
- Muscular Dystrophy, Duchenne
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 17 participants (actual)
- Lead sponsor
- Fondazione Policlinico Universitario Agostino Gemelli IRCCSUniversity, hospital or other
- Study start
- 18 Mar 2022 (actual)
- Primary completion
- 30 Apr 2025 (actual)
- Study completion
- 30 Jun 2025 (actual)
- First posted
- 27 Apr 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.
Improved standards of care and the regular early use of glucocorticoid treatment have changed the natural history of Duchenne muscular dystrophy (DMD), affecting both survival and time of loss of functional milestones. More recently, there has been increasing evidence of an additional benefit from new therapeutic approaches based on mechanisms targeting specific types of mutation, as Atarulen, authorised in the European Union as Translarna since 31 July 2014 to treat DMD boys with non sense mutations. As there is increasing evidence that specific groups of mutations may have different progression of the disease, it has become mandatory to obtain more detailed long-term information about the patterns of progression related to different genotypes. Natural history of DMD boys carrying deletions has been more studied and less is known about boys carrying small mutations that represent 20% of DMD patients. The aim of this project is to better define the natural history of these patients and to better understand the clinical response to mutation-specific therapies aimed at restoring dystrophin protein production.
Detailed description
In the last years, motor functional assessments have helped to define a better natural history of DMD patients, showing different clustering of disease progression according to the genotype and locus of mutation. Within the spectrum of severity of DMD, variability in phenotype among deletions has been previously reported. However all clinical assessments have the common disadvantage of being dependent on patient collaboration and interaction with the examiner. Therefore, the need to identify new biomarkers as measurable indicators of biologic condition has become important. To date several studies have shown that Magnetic Resonance Imaging (MRI) and spectroscopy provide sensitive markers of muscle pathology and disease progression in both upper and lower limbs of DMD subjects, suggesting MRI as a promising non-invasive candidate biomarker. Muscle MRI has the advantage of being relatively independent of patient collaboration. In previous studies, quantitative thigh muscle MRI values highly correlated with clinical outcome measures and loss of ambulation (LOA) and qualitative assessment scoring showed a direct correlation with the the duration of illness and fibro-fatty changes. More recently, our team found a relation between the functional scores and severe involvement on muscle MRI of upper limb in both ambulant and non-ambulant DMD boys. Furthermore, in the last decades the evidence that the age of LOA varies between DMD individuals carrying mutations abolishing dystrophin expression, has suggested the existence of trans-acting variants in modifier genes. It has been recently reported that some single nucleotide polymorphisms (SNPs) in a few identified genes can be considered as DMD modifiers and responsible for some of the inter-individual variability observed in the clinical disease course. To date, variants in five loci have been associated with variability in human DMD sub-phenotypes: Secreted Phosphoprotein 1 (SPP1), Latent Transforming Growth Factor-Beta Binding Protein 4 (LTBP4), Cluster of differentiation 40 (CD40), alfa-actinin-3 (ACTN3), and Thrombospondin 1 (THBS1). These genes are implicated in several interconnected molecular pathways regulating inflammatory response to muscle damage, regeneration, fibrosis or are more directly implicated in muscle power and sprint performance. Described variants have a regulatory function or alter protein sequence and could delay median LOA by approximately 1 to 2 years. Furthermore, more recently, native urine derived stem cells were demonstrated to express dystrophin transcript and protein (following myoblast determination protein 1 (MyoD) differentiation) in both DMD patients and control group and they could be considered a valid cell tool for either genotype characterization and functional studies on both DMD transcript and dystrophin (DYS) protein. So far, the results of the literature on small mutations report a wide variability of clinical findings and it could be hypothesized that the variable trajectories of progression and the overall severity and loss of important milestones may depend by several factors. One could assume that this finding could be related to the different site of mutations and specific exon involvement or to the type of the aminoacidic changes that could be able to produce different expressions of residual protein with subsequent differences in the severity of phenotypes. These points have not been systematically explored and the use of biomarkers may facilitate to identify distinct phenotypes and their correlation with different genotypes. This project aims to investigate whether specific genotype characterization, functional assessments, muscle MRI could help to establish a better genotype and phenotype characterization in a group of DMD patients carrying small mutations. I hypothesize that these tools alone or combined may help to allow describing the natural history.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Group of DMD patients with different type of small mutations (Group 1) | – | Diagnostic Test: MUSCLE MAGNETIC RESONANCE IMAGING (MRI)Group of DMD patients with different type of small mutations (15 ambulant or not-ambulant patients) |
| Group of DMD patients with non sense mutations in treatment with Traslarna (Group 2) | – | Diagnostic Test: MUSCLE MAGNETIC RESONANCE IMAGING (MRI)Group of 10 ambulant DMD patients with non sense mutations in treatment with Traslarna (3-[5-(2-fluoro-phenyl)-[1,2,4]oxadiazole-3-yl]-benzoic acid). |
Who may qualify
- Ages
- 4 to 30 years
- Sex
- Male only
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
- Study population
- All 25 patients had genetically proven DMD diagnosis with a small mutation genotype; the sample includes both ambulant and non ambulant patients; Ten patients of the 25 are in treatment with Atarulen.
Key inclusion criteria (1 listed)
- DMD diagnosis confirming a small mutation genotype.
Key exclusion criteria (3 listed)
- DMD patient enrolled in other clinical trials using genetic approach
- impossibility to perform MRI without sedation
- presence of severe cognitive or behavioral problems
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 |
|---|---|---|
| MUSCLE MAGNETIC RESONANCE IMAGING (MRI)Also: Genetic exams, Functional motor and respiratory assessmentsTo assess longitudinally at baseline and 1 year later changes on muscle MRI, genetic test, functional motor and respiratory assessments in the DMD group with different type of small mutations and the DMD group with non sense mutations treated with Atarulen in order to better define natural history of these patients. . | Diagnostic test | Group of DMD patients with different type of small mutations (Group 1), Group of DMD patients with non sense mutations in treatment with Traslarna (Group 2) |
Primary outcome
Longitudinal Motor changes in 15 DMD boys with different types of small mutations (Group 1)
Time frame: 1 year
To found in a cohort of 15 patients with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in motor functional assessments including the six minute walking test and the Performance of the Upper Limb.
Longitudinal respiratory changes in 15 DMD boys with different types of small mutations (Group 1)
Time frame: 1 year
To found in the same cohort of 15 patients with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in respiratory data using the Peak Expiratory Flow percentage predicted. ,
Longitudinal Muscle MRI changes in 15 DMD boys with different types of small mutations (Group 1)
Time frame: 1 year
To found in the same cohort of 15 patients with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in muscle MRI scores
Longitudinal genetic changes in 15 DMD boys with different types of small mutations (Group 1)
Time frame: 1 year
To found in the same cohort of 15 patients (prospective cohort) with different types of small mutations at baseline (T0) and 1 year later (T1) some differences in genetic test (urinary stem cells for MiRNA study). Genomic DNA exploring the 5 SNPs associated to the LOA will be collected at T0 only
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 3 Aug 2026.
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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.
CLAUDIA BROGNA, MD, PhD principal investigator
Fondazione Policlinico Gemelli., IRCCS, Rome, Italy
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 Muscular Dystrophy, Duchenne, run by Fondazione Policlinico Universitario Agostino Gemelli IRCCS 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 1 inclusion and 3 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 3 Aug 2026. 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 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?
Longitudinal Motor changes in 15 DMD boys with different types of small mutations (Group 1) (time frame: 1 year). The study lists 4 primary outcomes in all. 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 3 Aug 2026.