Clinical trial • Phase III • Musculoskeletal

Delandistrogene moxeparvovec for Duchenne muscular dystrophy

Phase III trial of Delandistrogene moxeparvovec for Duchenne muscular dystrophy. open-label, none/not specified-controlled. 319 participants.

Overview

Trial Therapeutic Area
Musculoskeletal
Trial Disease
Duchenne muscular dystrophy
Trial Stage
Phase III
Drug Modality
Gene therapy
Paediatric Trial
Yes
Orphan Drug
Yes

Key dates

Initial CTIS Submission Date
17-11-2023
First CTIS Authorization Date
14-03-2024

Trial design

open-label, none/not specified-controlled Phase III trial across 7 sites in Belgium, Germany, Italy and others.

Open Label
Yes
Comparator
None/Not specified
Target Sample Size
319
Trial Duration For Participant
3435

Eligibility

Recruits 319 paediatric patients.

Vulnerable Population
The trial includes vulnerable populations (minors). Consent/assent handling: consent is provided by a parent(s) or legal caregiver(s) for participants who are minors; participants ≥18 provide their own consent. Country-specific assent and consent documents are available (multiple country ICF and assent forms listed for ages/strata such as assent for ages 6-11, 7-12, 13-17). Language-specific ICF/assent documents are provided (English, Italian, German, Spanish, French, Dutch as per country documents).

Inclusion criteria

  • {"criterion_text":"- Received delandistrogene moxeparvovec for Duchenne muscular dystrophy in a previous clinical study"}
  • {"criterion_text":"- Has (a) parent(s) or legal caregiver(s) or is ≥18 years of age and able to understand and comply with the study visit schedule and all other protocol requirements"}

Exclusion criteria

  • {"criterion_text":"-"}

Endpoints

Primary endpoints

  • {"endpoint_text":"- Number of Participants with a Treatment-emergent Adverse Event (TEAE), Serious Adverse Event (SAE), and Adverse Event of Special Interest (AESI)","definition_or_measurement_approach":""}

Secondary endpoints

  • {"endpoint_text":"- Change in the North Star Ambulatory Assessment (NSAA) Total Score From Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in Time to Rise From Floor From Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in Time of 10-meter Walk/Run (10MWR) from Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation.","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in Performance of Upper Limb (PUL) (Version 2.0) Total Scores from Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in PUL (Version 2.0) Domain Specific Scores from Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in Forced Vital Capacity Percent (FVC%) Predicted from Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in Peak Expiratory Flow Percent (PEF%) Predicted from Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in Cardiac Magnetic Resonance Imaging (MRI) findings from Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}
  • {"endpoint_text":"- Change in Musculoskeletal MRI Findings from Pre-infusion Baseline of Delandistrogene Moxeparvovec to the end of study participation","definition_or_measurement_approach":""}

Recruitment

Planned Sample Size
319
Recruitment Window Months
112
Consent Approach
Informed consent is obtained from participants ≥18 years. For minors, consent is obtained from a parent(s) or legal caregiver(s) and assent is obtained from the child as appropriate. Age-specific assent/ICF documents are provided (examples: Italy assent 6-11y and 12-17y; Germany assent 7-12y and 13-17y; Belgium assent 7-12y and 13-maturity; Spain and other countries have country-specific ICF and assent forms). Documents are available in multiple languages (English, Italian, German, Spanish, French, Dutch) as per country.

Methods

  • Patient recruitment via SareptAlly contact (email: SareptAlly@sarepta.com; telephone: +18887273782)
  • Site-based recruitment at participating hospital/clinic sites in Belgium, Germany, Italy, and Spain (local site investigators and clinics listed in country Part II entries)
  • Country-specific recruitment procedures documented in K1 recruitment arrangements (country K1 recruitment procedure description documents available for Belgium, Germany, Italy, Spain)

Geography

Total Number Of Sites
7
Total Number Of Participants
74

Belgium

Earliest CTIS Part Ii Submission Date
22-02-2024
Latest Decision Or Authorization Date
14-04-2026
Processing Time Days
782
Number Of Sites
1
Number Of Participants
5

Sites

Site Name
Universitair Ziekenhuis Gent
Department Name
406: Neuromuscular Reference Centre (NMRC)
Principal Investigator Name
Nicolas Deconinck
Principal Investigator Email
nicolas.deconinck@huderf.be
Contact Person Name
Nicolas Deconinck
Contact Person Email
nicolas.deconinck@huderf.be

Germany

Earliest CTIS Part Ii Submission Date
29-01-2024
Latest Decision Or Authorization Date
14-04-2026
Processing Time Days
806
Number Of Sites
1
Number Of Participants
9

Sites

Site Name
Universitaetsklinikum Essen AöR
Department Name
409: Klinik für Kinderheilkunde I
Principal Investigator Name
Andrea Gangfuss
Principal Investigator Email
andrea.gangfuss@uk-essen.de
Contact Person Name
Andrea Gangfuss
Contact Person Email
andrea.gangfuss@uk-essen.de

Italy

Earliest CTIS Part Ii Submission Date
20-02-2024
Latest Decision Or Authorization Date
20-04-2026
Processing Time Days
790
Number Of Sites
3
Number Of Participants
24

Sites

Site Name
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Department Name
404: U.O.C. Neuropsichiatria Infantile
Principal Investigator Name
Eugenio Mercuri
Principal Investigator Email
eugeniomaria.mercuri@policlinicogemelli.it
Contact Person Name
Eugenio Mercuri
Site Name
Giannina Gaslini Institute For Scientific Hospitalization And Care
Department Name
416: Centro di Miologia Traslazionale e Sperimentale
Principal Investigator Name
Claudio Bruno
Principal Investigator Email
claudiobruno@gaslini.org
Contact Person Name
Claudio Bruno
Contact Person Email
claudiobruno@gaslini.org
Site Name
Fondazione IRCCS Ca Granda Ospedale Maggiore Policlinico
Department Name
444: UOC Neurologia Pad. Monteggia
Principal Investigator Name
Giacomo Pietro Comi
Principal Investigator Email
giacomo.comi@unimi.it
Contact Person Name
Giacomo Pietro Comi
Contact Person Email
giacomo.comi@unimi.it

Spain

Earliest CTIS Part Ii Submission Date
22-02-2024
Latest Decision Or Authorization Date
20-04-2026
Processing Time Days
788
Number Of Sites
2
Number Of Participants
36

Sites

Site Name
Sant Joan De Deu Barcelona Hospital
Department Name
425: Neuropediatría
Principal Investigator Name
Andres Nascimento Osorio
Principal Investigator Email
andres.nascimento@sjd.es
Contact Person Name
Andres Nascimento Osorio
Contact Person Email
andres.nascimento@sjd.es
Site Name
Hospital Universitario Y Politecnico La Fe
Department Name
424: Neurología
Principal Investigator Name
Nuria Muelas Gómez
Principal Investigator Email
nuriamugo@gmail.com
Contact Person Name
Nuria Muelas Gómez
Contact Person Email
nuriamugo@gmail.com

Sponsor

Primary sponsor

Full Name
Sarepta Therapeutics Inc.
Organisation Type
Pharmaceutical company
Country Of Registered Address
United States

Contract research organisations

Name
Parexel International (IRL) Limited
Responsibilities
Site Management, Site Contract/Budget Negotiation, Import/Export, Equipment Provisioning

Third parties

  • {"country":"Ireland","full_name":"Parexel International (IRL) Limited","duties_or_roles":"Site Management, Site Contract/Budget Negotiation, Import/Export, Equipment Provisioning","organisation_type":"Pharmaceutical company"}

Investigational products

Investigational Product Name
Delandistrogene moxeparvovec-rokl
Active Substance
Delandistrogene moxeparvovec
Modality
Gene therapy
Routes Of Administration
Intravenous
Route
Intravenous
Authorisation Status
prodAuthStatus:1
Orphan Designation
Yes
Maximum Dose
13300000000000 vector genomes (vg)/mL

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