At a glance
- What the study gets you
- Access to the study treatment being tested
- Type of study
- Interventional (receives a drug or procedure)
- Time in hospital
- In-person visits at study sites — visit count not specified by the sponsor
- Drug or intervention
- Givinostat (drug), Placebo (drug)
- How long the study runs
- Study runs about 48 months (dates as stated)
- About the drug or intervention
- Givinostat — drug: Givinostat has to be administered twice daily in a fed state according to a flexible dose regimen based on patient weight. · Placebo — drug: Placebo, manufactured to mimic givinostat, has to be administered twice daily in a fed state according to a flexible dose regimen based on patient weight.
- Patient visit burden
- Not specified by the sponsor
In plain English
This study looks at how well a medicine called givinostat works, and how safe it is, in boys and young men with Duchenne muscular dystrophy (DMD) who can no longer walk and use a wheelchair. The study is paid for by a company called Italfarmaco. What the medicine is compared against, and the study results so far, are not stated — ask the trial team.
Who can take part
- Males aged 9 to under 18 years at screening
- A genetic diagnosis of Duchenne muscular dystrophy
- Unable to walk (wheelchair bound) — either unable to do a 10-metre walk/run test, or unable to finish it in 30 seconds or less without support or devices
- A score of 3 to 6 on the entry item of the Performance of the Upper Limb test (version 2.0), which measures arm function
- If taking heart medicines for DMD-related heart muscle problems (such as ACE inhibitors, beta-blockers or water tablets), the dose must have been stable for at least 1 month before starting study treatment
- Taking a stable dose of corticosteroid medicine for at least 6 months before starting study treatment, with no big dose changes (apart from changes due to weight)
- Willing to use contraception, if relevant, from the start of the study until 3 months after the last dose
- Able to agree to take part, with written consent from the patient and/or parent or legal guardian
Who may not be able to
- Took another experimental drug within 3 months before starting study treatment
- Took any dystrophin restoration treatment (for example ataluren or exon skipping) within 6 months before starting study treatment
- Have had any gene therapy (for example micro-dystrophin delivery)
- Took any medicine or supplement (other than corticosteroids) that could affect muscle strength or function within 3 months before starting study treatment — vitamin D, calcium and other supplements are allowed
- Taking testosterone, unless it is replacement therapy for delayed puberty, at a stable dose for 6 months, with normal testosterone levels for age
- Elbow contractures (stiffness) of more than 30 degrees in the dominant arm
- Cannot do repeat Performance of the Upper Limb tests consistently at screening
- Breathing test (forced vital capacity) below 40% of the predicted value
- Need ventilator (breathing machine) help during the day — night-time help is allowed
- An episode of respiratory (breathing) failure within 8 weeks before screening
- Symptomatic heart muscle disease or heart failure, and/or heart pump function (left ventricular ejection fraction) below 45%
- A certain heart rhythm measurement (corrected QT interval) above 450 milliseconds, or extra risk factors for a serious heart rhythm problem
- Major surgery planned (including spine surgery) within 1 year of starting study treatment
- Poorly controlled asthma or lung disease that might affect breathing
- Blood test results below the normal range for platelets, white blood cells or haemoglobin
- Fasting triglycerides (a type of blood fat) above 300 mg/dL (3.42 mmol/L)
- Current or past liver disease or impairment, including high bilirubin (unless due to Gilbert's disease)
- Poor kidney function based on a blood test (cystatin C more than twice the upper limit of normal)
- Positive test for hepatitis B, hepatitis C or HIV
- Allergic reaction to any ingredient in the study medicine
- Cannot tolerate or absorb sorbitol, or have hereditary fructose intolerance
- Other uncontrolled neurological or health conditions not related to DMD, in the opinion of the researcher
- Mental health or social situations that would make it hard to understand or follow the study tests and procedures, in the opinion of the researcher
- Cannot have an MRI scan (for example due to claustrophobia, metal implants or uncontrolled seizures)
What taking part involves
- • Not stated — ask the trial team
- • The study involves muscle function tests, including a test of arm function (Performance of the Upper Limb, version 2.0)
- • MRI scans are part of the study
Time commitment: Number of visits, how long the study lasts, and how the medicine is taken are not stated — ask the trial team.
Plain-English summary (AI-generated) from registry data. Not eligibility advice — only the trial team can confirm whether you can take part. Use the eligibility checker to see how your health profile matches this trial.
- Type of study
- Testing a treatment
- Ages
- 9 Years to 17 Years
- Who
- Male
- Number of participants
- 138
- Started
- 2024-02-19
- Last checked
- 2026-07
Plain English Summary
What is this study?
- • Testing a new treatment for duchenne muscular dystrophy
- • Phase3 - 138 participants
- • This is a randomised, double-blind, placebo-controlled, multicentre study to evaluate the efficacy, safety, and tolerability of givinostat in non-ambulant male paediatric (aged 9 to \<18 years) patients with DMD
Who can take part?
- • Ages 9 Years to 17 Years
- • Diagnosed with duchenne muscular dystrophy
- • Male only
Where?
- • Newcastle upon Tyne - Newcastle upon Tyne Hospitals NHS Foundation Trust - Newcastle University
- • Oxford - Oxford University Hospitals NHS Foundation Trust
- • Glasgow - NHS Greater Glasgow and Clyde - Royal Hospital for Children
This is a simplified summary. Always discuss with your doctor before making any decisions.
About This Trial
This is a randomised, double-blind, placebo-controlled, multicentre study to evaluate the efficacy, safety, and tolerability of givinostat in non-ambulant male paediatric (aged 9 to \<18 years) patients with DMD. 138 patients will be randomised 2:1 to givinostat or placebo and will be treated for 18 months. * Planned screening duration: approximately 4 weeks (±14 days) * Planned treatment duration: 18 months (approximately 72 weeks) * Planned follow-up duration: 4 weeks (±7 days) (for patients not participating in the long-term safety study) * Total duration of study participation: up to 83 weeks (ie, 20-21 months)
More detail
Duchenne muscular dystrophy is a rare, progressive, debilitating and life-threatening condition for which there is a critical need for novel therapies that are effective and well-tolerated in all DMD patients. Steroids are generally recognised as the standard of care in the general DMD population; however, they are not suitable for all patients. Givinostat, a HDAC inhibitor, was developed for the treatment of DMD based on: (i) the role that increased HDAC activity is thought to exert in contributing to DMD pathogenesis; and (ii) givinostat's ability to counter the pathophysiological and degenerative mechanisms causing muscle insufficiency in boys with DMD. This study will evaluate the efficacy, safety, and tolerability of givinostat in non-ambulant patients to further corroborate data from the completed phase 3 pivotal study of givinostat in ambulant patients with DMD (ie, Study DSC/14/2357/48, NCT02851797). Primary Objective of the study is to demonstrate the efficacy of givinostat in reducing muscle decline in non-ambulant DMD patients, as measured by Performance of the Upper Limb (PUL) 2.0. Secondary Objectives of the study are to evaluate the safety and tolerability of givinostat in non-ambulant DMD patients, and to further explore the efficacy of givinostat in non-ambulant DMD patients. A total of 138 patients are planned for enrolment. Patients will be randomised 2:1 to givinostat or placebo and will be treated for 18 months. The study will be comprised of: * A screening period, during which eligibility will be confirmed within 4 weeks (±14 days) * A baseline visit, during which randomisation will be performed * A double-blind treatment period, during which patients will receive either givinostat or placebo for 18 months (approximately 72 weeks) * An end of study visit, occurring at Week 72 (±7 days) at the end of the treatment period. At the end of study visit, all the patients (regardless of treatment arm) will be offered enrolment in the long-term safety study DSC/14/2357/51 (NCT03373968) during which they will receive givinostat. * A follow-up visit, for those patients not consenting to participation in the long-term safety study, that will occur 4 weeks after the end of study visit (ie, Week 76 ±7 days).
How this trial compares with your answers
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What we know so far
Still need:
- • Tell us your age for better matching
- • Tell us your sex for better matching
Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.
Eligibility at a Glance
Key info
- Age: 9 Years - 17 Years
- Who can join: Male only
Biomarkers mentioned
What the study is looking for
- ✓Patients must satisfy all the following criteria:
- ✓Children and adolescent males aged ≥ 9 to \<18 years at screening (patients ≥ 18 years of age at screening will not...
- ✓Are able to give informed assent and/or consent in writing signed by the patient and/or parent/legal guardian...
- ✓A genetic diagnosis of DMD
- ✓Non-ambulant, defined as being wheelchair bound and:
Who cannot take part
- ✗Patients will be excluded from the study if they satisfy any of the following criteria:
- ✗Exposure to another investigational drug within 3 months prior to start of study treatment.
- ✗Have exposure to any dystrophin restoration product (eg, Ataluren, Exon skipping) within 6 months prior to the start...
- ✗Having received any gene therapy (eg, AAV Micro-dystrophin delivery) prior to start of study treatment
- ✗Elbow-flexion contractures \>30° in the dominant arm
See the full criteria
Where Is This Study? (3 UK sites)
Newcastle upon Tyne Hospitals NHS Foundation Trust - Newcastle University
Newcastle upon Tyne NE1 3BZ, United Kingdom
Oxford University Hospitals NHS Foundation Trust
Oxford OX3 9DU, United Kingdom
NHS Greater Glasgow and Clyde - Royal Hospital for Children
Glasgow G51 4TF, United Kingdom
How to Get in Touch
Italfarmaco Patient Advocacy
Sponsor contactCONTACT
