Clinical trial • Phase III • Rare Disease

apazunersen for Angelman syndrome

Phase III trial of apazunersen for Angelman syndrome. open-label, none/not specified-controlled. 60 participants.

Overview

Trial Therapeutic Area
Rare Disease
Trial Disease
Angelman syndrome
Trial Stage
Phase III
Drug Modality
Oligonucleotide
Paediatric Trial
Yes
Orphan Drug
Yes

Key dates

Initial CTIS Submission Date
15-04-2024
First CTIS Authorization Date
18-07-2024

Trial design

open-label, none/not specified-controlled Phase III trial across 6 sites in Germany, Spain, France.

Open Label
Yes
Comparator
None/Not specified
Target Sample Size
60

Eligibility

Recruits 60 paediatric patients.

Pregnancy Exclusion
Pregnant or breastfeeding or planning to become pregnant (self or partner) at any time during the study.
Vulnerable Population
Pediatric subjects are included (isVulnerablePopulationSelected = true). Informed consent must be signed by parent(s) or legal guardian(s). No specific assent process text is provided in the available data.

Inclusion criteria

  • {"criterion_text":"- Signed informed consent from parent(s) or legal guardian(s)."}
  • {"criterion_text":"- Completed a final study visit in a prior clinical trial with GTX-102. If the subject has an ongoing adverse event (AE), Medical Monitor approval is required to rollover. The Screening visit must occur within 6 months of the last visit in the prior GTX-102 study."}
  • {"criterion_text":"- From the time of informed consent through the end of the study and for at least 6 months after the final dose of GTX-102, females of childbearing potential who are sexually active must use highly effective contraception or abstinence. Males are able to participate if they agree to remain abstinent (refrain from heterosexual intercourse) or use acceptable contraceptive methods during the study and for at least 3 months after the final dose of GTX-102."}

Exclusion criteria

  • {"criterion_text":"- Discontinued from prior GTX-102 trial due to treatment-emergent adverse event assessed as related to GTX-102 and where the risk of study participation outweighs the benefits as deemed by the clinical judgment of the Investigator."}
  • {"criterion_text":"- History or evidence of any other medical, neurological, or psychological condition that would expose the subject to an undue risk of a significant AE or interfere with study assessments during the course of the trial as determined by the clinical judgment of the Investigator."}
  • {"criterion_text":"- Known hypersensitivity to GTX-102 or its excipients that, in the judgment of the Investigator, places the subject at increased risk for adverse effects."}
  • {"criterion_text":"- Pregnant or breastfeeding or planning to become pregnant (self or partner) at any time during the study."}

Endpoints

Primary endpoints

  • {"endpoint_text":"- Treatment-emergent AEs and SAEs, frequency, severity, and relationship to investigational product throughout the study","definition_or_measurement_approach":"Monitoring and recording of treatment-emergent adverse events (AEs) and serious adverse events (SAEs) with assessment of frequency, severity, and relationship to the investigational product throughout the study."}

Secondary endpoints

  • {"endpoint_text":"- Change from LTE Month 0 and pretreatment (when available) throughout the study in: • Bayley-4 Cognitive raw score • Bayley-4 Receptive Communication raw score • Bayley-4 Expressive Communication raw score • Bayley-4 Gross Motor raw score • Bayley-4 Fine Motor raw score","definition_or_measurement_approach":"Change from LTE Month 0 and, when available, pre-treatment baseline measured using Bayley-4 raw scores for cognitive, receptive communication, expressive communication, gross motor, and fine motor domains."}

Recruitment

Planned Sample Size
60
Recruitment Window Months
60
Consent Approach
Signed informed consent must be provided by parent(s) or legal guardian(s). Parent/guardian ICFs and subject information are available in multiple languages (documents listed include German, Spanish, French; patient-facing documents are available in English as well). No specific assent procedure is provided in the available documents.

Geography

Total Number Of Sites
6
Total Number Of Participants
38

Germany

Earliest CTIS Part Ii Submission Date
09-07-2024
Latest Decision Or Authorization Date
12-11-2025
Processing Time Days
491
Number Of Sites
2
Number Of Participants
10

Sites

Site Name
University Medical Center Hamburg-Eppendorf
Department Name
Pediatric Neurology
Contact Person Name
Deike Weiss
Contact Person Email
d.weiss@uke.de
Site Name
Universitaet Leipzig
Department Name
Pediatric Neurology
Contact Person Name
Andreas Merkenschlager

Spain

Earliest CTIS Part Ii Submission Date
01-07-2024
Latest Decision Or Authorization Date
13-11-2025
Processing Time Days
500
Number Of Sites
2
Number Of Participants
17

Sites

Site Name
Hospital Universitario Puerta De Hierro De Majadahonda
Department Name
Pediatric
Contact Person Name
Maria Lorenzo Ruiz
Contact Person Email
maria.lorenzo@salud.madrid.org
Site Name
Parc Tauli Hospital Universitari
Department Name
Pediatric
Contact Person Name
Ana Roche Martinez
Contact Person Email
aroche@tauli.cat

France

Earliest CTIS Part Ii Submission Date
10-07-2024
Latest Decision Or Authorization Date
16-02-2026
Processing Time Days
586
Number Of Sites
2
Number Of Participants
11

Sites

Site Name
Centre Hospitalier Regional De Marseille
Department Name
Hôpital d’enfants de la Timone
Contact Person Name
Mathieu MILH
Contact Person Email
mathieu.milh@ap-hm.fr
Site Name
Hopital Necker Enfants Malades
Department Name
Neurologie Pédiatrique
Contact Person Name
Nadia BAHI-BUISON
Contact Person Email
nadia.bahi-buisson@aphp.fr

Sponsor

Primary sponsor

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

Contract research organisations

Name
Primevigilance Limited
Responsibilities
8
Name
Suvoda LLC
Responsibilities
3
Name
Almac Clinical Services Limited
Responsibilities
14
Name
Icon Clinical Research Limited
Responsibilities
4
Name
Worldwide Clinical Trials d.o.o.
Responsibilities
1,12,5,6
Name
Charles River Laboratories Montreal ULC
Responsibilities
4
Name
Gray Consulting Inc.
Responsibilities
15: Patient reimbursement
Name
Yprime LLC
Responsibilities
15: Rater training; 7
Name
Clario eResearch Technology GmbH
Responsibilities
15: ECG
Name
Veeva Systems Inc.
Responsibilities
15: eTMF
Name
Medidata Solutions Inc.
Responsibilities
7
Name
EPL Pathology Archives LLC
Responsibilities
15: Laboratory Sample Storage

Third parties

  • {"country":"United Kingdom","full_name":"Primevigilance Limited","duties_or_roles":"8","organisation_type":"Pharmaceutical company"}
  • {"country":"United States","full_name":"Suvoda LLC","duties_or_roles":"3","organisation_type":"Non-Pharmaceutical company"}
  • {"country":"United Kingdom (Northern Ireland)","full_name":"Almac Clinical Services Limited","duties_or_roles":"14","organisation_type":"Pharmaceutical company"}
  • {"country":"Ireland","full_name":"Icon Clinical Research Limited","duties_or_roles":"4","organisation_type":"Pharmaceutical company"}
  • {"country":"United States","full_name":"Yprime LLC","duties_or_roles":"15: Rater training; 7","organisation_type":"Non-Pharmaceutical company"}
  • {"country":"Croatia","full_name":"Worldwide Clinical Trials d.o.o.","duties_or_roles":"1,12,5,6","organisation_type":"Pharmaceutical company"}
  • {"country":"United States","full_name":"Gray Consulting Inc.","duties_or_roles":"15: Patient reimbursement","organisation_type":"Pharmaceutical company"}
  • {"country":"United States","full_name":"Medidata Solutions Inc.","duties_or_roles":"7","organisation_type":"Non-Pharmaceutical company"}
  • {"country":"Canada","full_name":"Charles River Laboratories Montreal ULC","duties_or_roles":"4","organisation_type":"Pharmaceutical company"}
  • {"country":"Germany","full_name":"Clario eResearch Technology GmbH","duties_or_roles":"15: ECG","organisation_type":"Industry"}
  • {"country":"United States","full_name":"Veeva Systems Inc.","duties_or_roles":"15: eTMF","organisation_type":"Non-Pharmaceutical company"}
  • {"country":"United States","full_name":"EPL Pathology Archives LLC","duties_or_roles":"15: Laboratory Sample Storage","organisation_type":"Laboratory/Research/Testing facility"}

Investigational products

Investigational Product Name
GTX-102
Active Substance
apazunersen
Modality
Oligonucleotide
Routes Of Administration
Intrathecal use
Route
Intrathecal
Orphan Designation
Yes
Investigational Product Name
GTX/UX Diluent and Flush Solution
Active Substance
sodium dihydrogen phosphate dihydrate; disodium phosphate; potassium chloride; sodium chloride; calcium chloride dihydrate; magnesium sulfate heptahydrate
Modality
Small molecule
Routes Of Administration
Intrathecal use
Route
Intrathecal
Investigational Product Name
ELLIOTTS B SOLUTION (buffered intrathecal electrolyte/dextrose injection)
Active Substance
calcium chloride; glucose anhydrous; sodium hydrogen carbonate; potassium chloride; sodium chloride; sodium phosphate; magnesium sulfate
Modality
Small molecule
Routes Of Administration
Intrathecal use
Route
Intrathecal

Related trials

Other published trials that may interest you.