NCT04428281

Brief Summary

This is a phase I, multicenter, non-randomized, adaptive, open-label, multiple ascending, intra-participant, dose-escalation study with a long-term extension (LTE) part and an optional open-label extension (OOE) part. The objective of the study is to investigate the safety, tolerability, PK and PD of RO7248824 administered intrathecally (IT) in participants with AS. Two linked sets of dose escalation cohorts are planned based on two different age groups, namely participants with AS aged ≥ 5 to ≤ 12 years in cohorts A1 to A5 (with at least 2 participants ≤ 8 years old in each cohort) and AS participants aged ≥ 1 to ≤ 4 years in cohorts B1 to B5. The two sets of cohorts will be run in parallel, with each cohort A1 to A5 preceding and gating the linked cohort B1 to B5 (e.g., A1 precedes B1).

Trial Health

90
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
74

participants targeted

Target at P75+ for phase_1

Timeline
Completed

Started Aug 2020

Longer than P75 for phase_1

Geographic Reach
4 countries

12 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

June 9, 2020

Completed
2 days until next milestone

First Posted

Study publicly available on registry

June 11, 2020

Completed
2 months until next milestone

Study Start

First participant enrolled

August 19, 2020

Completed
5 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 31, 2025

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

July 31, 2025

Completed
Last Updated

August 24, 2025

Status Verified

August 1, 2025

Enrollment Period

5 years

First QC Date

June 9, 2020

Last Update Submit

August 22, 2025

Conditions

Keywords

RO7248824; Angelman; ASO; LNA; Angelman syndrome

Outcome Measures

Primary Outcomes (11)

  • Frequency and Severity of Adverse Events (AEs)

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal. OOE part: From baseline OOE visit to final OOE visit (Day 420) or early termination.

    Baseline to last visit or early withdrawal

  • Frequency and Severity of Serious Adverse Events (SAEs)

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal. OOE part: From baseline OOE visit to final OOE visit (Day 420) or early termination.

    Baseline to last visit or early withdrawal

  • Number of Participants Discontinued Treatment due to AEs

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal. OOE part: From baseline OOE visit to final OOE visit (Day 420) or early termination.

    Baseline to last visit or early withdrawal

  • Frequency of Abnormal Laboratory Findings (Blood, Cerebrospinal Fluid [CSF] and Urinalysis)

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal. OOE part: From baseline OOE visit to final OOE visit (Day 420) or early termination.

    Baseline to last visit or early withdrawal

  • Frequency of Abnormal Vital Signs

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal.

    Baseline to last visit or early withdrawal

  • Frequency of Abnormal Electrocardiography (ECG) Values

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal.

    Baseline to last visit or early withdrawal

  • Mean Changes From Baseline in Temperature Over Time

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal.

    Baseline to last visit or early withdrawal

  • Mean Changes From Baseline in Systolic Blood Pressure Over Time

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal.

    Baseline to last visit or early withdrawal

  • Mean Changes From Baseline in Diastolic Blood Pressure Over Time

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal.

    Baseline to last visit or early withdrawal

  • Mean Changes From Baseline in Heartrate Over Time

    MAD part: From the baseline MAD visit to the final MAD visit (D365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (D1092) or early withdrawal.

    Baseline to last visit or early withdrawal

  • Mean Changes From Baseline in Respiratory Rate Over Time

    MAD part: From the baseline MAD visit to the final MAD visit (Day 365) or early withdrawal. LTE part: From the baseline LTE visit to final LTE visit (Day 1092) or early withdrawal.

    Baseline to last visit or early withdrawal

Secondary Outcomes (4)

  • Time to Maximum Concentration (Tmax) for RO7248824

    Baseline to last visit or early withdrawal

  • Maximum Plasma Concentration Observed (Cmax) for RO7248824

    Baseline to last visit or early withdrawal

  • Area Under Curve (AUC) From Time 0 to Time of Last Sampling Point or Last Quantifiable Sample, Whichever Comes First (AUC last) for RO7248824

    Baseline to last visit or early withdrawal

  • AUC From Time 0 to Infinity (AUCinf) for RO7248824

    Baseline to last visit or early withdrawal

Study Arms (19)

Cohort A1 RO7248824

EXPERIMENTAL

Participants 5-12 years

Drug: RO7248824

Cohort A2 RO7248824

EXPERIMENTAL

Participants 5-12 years

Drug: RO7248824

Cohort A3 RO7248824

EXPERIMENTAL

Participants 5-12 years

Drug: RO7248824

Cohort A4 RO7248824

EXPERIMENTAL

Participants 5-12 years

Drug: RO7248824

Cohort A5 RO7248824

EXPERIMENTAL

Participants 5-12 years

Drug: RO7248824

Cohort B1 RO7248824

EXPERIMENTAL

Participants 1-4 years

Drug: RO7248824

Cohort B2 RO7248824

EXPERIMENTAL

Participants 1-4 years

Drug: RO7248824

Cohort B3 RO7248824

EXPERIMENTAL

Participants 1-4 years

Drug: RO7248824

Cohort B4 RO7248824

EXPERIMENTAL

Participants 1-4 years

Drug: RO7248824

Cohort B5 RO7248824

EXPERIMENTAL

Participants 1-4 years

Drug: RO7248824

LTE: Cohort EA1 RO7248824

EXPERIMENTAL

New participants (age 5-12) enrolling directly in the LTE part

Drug: RO7248824

LTE: Cohort EA2 RO7248824

EXPERIMENTAL

Participants continuing from multiple ascending dose (MAD) cohorts A1 and A2

Drug: RO7248824

LTE: Cohort EA3 RO7248824

EXPERIMENTAL

Participants continuing from MAD cohorts A3 and A4

Drug: RO7248824

LTE: Cohort EA4 RO7248824

EXPERIMENTAL

Participants continuing from MAD Cohort A5

Drug: RO7248824

LTE: Cohort EB1 RO7248824

EXPERIMENTAL

New participants (age 1-4) enrolling directly into the LTE

Drug: RO7248824

LTE: Cohort EB2 RO7248824

EXPERIMENTAL

Participants continuing from MAD cohorts B1 and B2

Drug: RO7248824

LTE: Cohort EB3 RO7248824

EXPERIMENTAL

Participants continuing from MAD cohorts B3 and B4

Drug: RO7248824

LTE: Cohort EB4 RO7248824

EXPERIMENTAL

Participants continuing from MAD Cohort B5

Drug: RO7248824

OOE: RO7248824

EXPERIMENTAL

Participants in the LTE part of the study will be given the opportunity to participate in the OOE part.

Drug: RO7248824

Interventions

In the MAD part, RO7248824 will be administered as IT injection of varing dose levels over a period of 8 weeks, with a minimum of approximately 4 weeks between each dose administration. In the LTE part, RO7248824 will be administered as IT injection of varying dose levels over a period of 144 weeks, with a minimum of approximately 16 weeks between each dose administration. In the OOE part, participants will receive RO7248824 as an IT injection with the same dosing regime as the LTE part over a period of up to 48 weeks.

Cohort A1 RO7248824Cohort A2 RO7248824Cohort A3 RO7248824Cohort A4 RO7248824Cohort A5 RO7248824Cohort B1 RO7248824Cohort B2 RO7248824Cohort B3 RO7248824Cohort B4 RO7248824Cohort B5 RO7248824LTE: Cohort EA1 RO7248824LTE: Cohort EA2 RO7248824LTE: Cohort EA3 RO7248824LTE: Cohort EA4 RO7248824LTE: Cohort EB1 RO7248824LTE: Cohort EB2 RO7248824LTE: Cohort EB3 RO7248824LTE: Cohort EB4 RO7248824OOE: RO7248824

Eligibility Criteria

Age1 Year - 12 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • The participant has a parent, caregiver or legal representative (hereinafter "caregiver") who is reliable, competent and at least 18 years of age. The caregiver is willing and able to accompany the participant to clinic visits and to be available to the Investigational Site by phone or email if needed and who (in the opinion of the Investigator) is and will remain sufficiently knowledgeable of participant's ongoing condition to respond to any inquiries about the participant from personnel from the Study Site.
  • A caregiver must be able to consent for the participant according to International Council on Harmonisation (ICH) and local regulations.
  • Ability to comply with all study requirements.
  • Have adequate supportive psychosocial circumstances.
  • Able to tolerate blood draws.
  • Able to undergo lumbar puncture (LP) and IT injection, under sedation or anesthesia if needed and as determined appropriate by the Investigator.
  • Stable medical status for at least 4 weeks prior to Screening and at the time of enrollment.
  • Body weight of ≥ 7 kg
  • Participant must be ≥ 1 to ≤ 12 years of age at the time of signing of the informed consent by the caregiver.
  • Clinical diagnosis of AS confirmed by a molecular diagnosis with genotypic classification of either Ubiquitin-protein ligase E3A (UBE3A) mutation of the maternal allele or deletion on the maternally inherited chromosome 15q11q13 that includes the UBE3A gene and is less than 7 megabyte (Mb) in size.
  • Reproductive Status:
  • Some of the provisions that follow may have limited applicability based on the age range of study participants (i.e., up to the age of 12) and the nature of the disease understudy. These provisions are nonetheless included for purposes of completeness in order:
  • A) Female Participants
  • A female participant is eligible to participate if she is not pregnant, not breastfeeding, and at least one of the following conditions applies:
  • Women of non-childbearing potential.
  • +6 more criteria

You may not qualify if:

  • Diagnostic Assessments
  • Clinically-significant laboratory, vital sign or electrocardiography (ECG) abnormalities at Screening
  • Type of Participants and Disease Characteristics
  • Molecular diagnosis of AS with genotypic classification: Paternal Uniparental Disomy (UPD) of 15q11-13; UBE3A Imprinting center defect (ID); A partial molecular diagnosis of AS, that cannot exclude (UPD)or ID despite appropriate genetic testing.
  • Clinically relevant hematological, hepatic, cardiac or renal disease or event, in the judgement of the Investigator.
  • Any concomitant condition that might interfere with the clinical evaluation of AS and that is not related to AS.
  • Known history of human immunodeficiency virus (HIV) or hepatitis B virus (HBV) or hepatitis C virus (HCV).
  • Any condition that increases risk of meningitis.
  • History of bleeding diathesis or coagulopathy.
  • A medical history of brain or spinal disease that would interfere with the LP process, CSF circulation or safety assessment
  • History of clinically significant post-lumbar-puncture headache of moderate or severe intensity and/or blood patch
  • Malignancy within 5 years of Screening
  • Hospitalization for any major medical or surgical procedure involving general anesthesia within 12 weeks of Screening or planned during the study
  • Premature birth with gestational age at birth below 34 weeks.
  • History of hypersensitivity to the investigational medicinal product (IMP), antisense oligonucleotides, or any excipients.
  • +9 more criteria

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (12)

UCLA Neuropsychiatric Institute

Los Angeles, California, 90024, United States

Location

Rady Children's Hospital - San Diego

San Diego, California, 92123, United States

Location

Rush Medical Center

Chicago, Illinois, 60612, United States

Location

Mayo Clinic - Rochester

Rochester, Minnesota, 55905, United States

Location

Columbia University Medical Center

New York, New York, 10032, United States

Location

Carolina Institute for Development DisabilitiesUniversity of North Carolina/School of Medicine

Carrboro, North Carolina, 27510, United States

Location

Baylor College of Med

Houston, Texas, 77030, United States

Location

Ospedale Pediatrico Bambino Gesù

Rome, Lazio, 00165, Italy

Location

Erasmus MC / location Sophia Kinderziekenhuis

Rotterdam, 3015 GJ, Netherlands

Location

Hospital Sant Joan De Deu

Esplugues de Llobregas, Barcelona, 08950, Spain

Location

Corporacio Sanitaria Parc Tauli

Sabadell, Barcelona, 08208, Spain

Location

Hospital Universitario Virgen del Rocío

Seville, 41013, Spain

Location

Related Publications (1)

  • Hipp JF, Bacino CA, Bird LM, Bruenig-Traebert I, Chan D, de Wit MC, Fontoura P, Hooper G, Jagasia R, Krishnan ML, Murtagh L, Noci A, Martinez AR, Schwab D, Serrano M, Shen MD, Tillmann J, Tjeertes J, Vincenzi B, Berry-Kravis E, Bonni A; Rugonersen Study Group; all TANGELO investigators. The UBE3A-ATS antisense oligonucleotide rugonersen in children with Angelman syndrome: a phase 1 trial. Nat Med. 2025 Sep;31(9):2936-2945. doi: 10.1038/s41591-025-03784-7. Epub 2025 Jul 11.

MeSH Terms

Conditions

Angelman Syndrome

Condition Hierarchy (Ancestors)

Movement DisordersCentral Nervous System DiseasesNervous System DiseasesAbnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesChromosome DisordersGenetic Diseases, InbornImprinting Disorders

Study Officials

  • Clinical Trials

    Hoffmann-La Roche

    STUDY DIRECTOR

Study Design

Study Type
interventional
Phase
phase 1
Allocation
NON RANDOMIZED
Masking
NONE
Purpose
TREATMENT
Intervention Model
PARALLEL
Model Details: Non-randomized, adaptive, open label, multiple ascending, intra-participant, dose-escalation study
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

June 9, 2020

First Posted

June 11, 2020

Study Start

August 19, 2020

Primary Completion

July 31, 2025

Study Completion

July 31, 2025

Last Updated

August 24, 2025

Record last verified: 2025-08

Data Sharing

IPD Sharing
Will share

Qualified researchers may request access to individual patient level data through the clinical study data request platform (www.vivli.org). Further details on Roche's criteria for eligible studies are available here (https://vivli.org/members/ourmembers/). For further details on Roche's Global Policy on the Sharing of Clinical Information and how to request access to related clinical study documents, see here (https://www.roche.com/research\_and\_development/who\_we\_are\_how\_we\_work/clinical\_trials/our\_commitment\_to\_data\_sharing.htm).

Locations