NCT05139810

Brief Summary

The purpose of this study was to evaluate the safety and efficacy of donidalorsen in participants with HAE and effect of donidalorsen on the quality and pattern of HAE attacks and their impact on quality of life (QoL).

Trial Health

98
On Track

Trial Health Score

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

Enrollment
91

participants targeted

Target at below P25 for phase_3

Timeline
Completed

Started Dec 2021

Geographic Reach
14 countries

51 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

November 18, 2021

Completed
13 days until next milestone

First Posted

Study publicly available on registry

December 1, 2021

Completed
2 days until next milestone

Study Start

First participant enrolled

December 3, 2021

Completed
1.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

November 9, 2023

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

November 9, 2023

Completed
1.3 years until next milestone

Results Posted

Study results publicly available

March 6, 2025

Completed
Last Updated

March 6, 2025

Status Verified

February 1, 2025

Enrollment Period

1.9 years

First QC Date

November 18, 2021

Results QC Date

February 13, 2025

Last Update Submit

February 13, 2025

Conditions

Keywords

HAE

Outcome Measures

Primary Outcomes (1)

  • Time-Normalized Investigator-Confirmed (IC) HAE Attack Rate (Per Month) From Week 1 to Week 25

    The time-adjusted HAE attack rate was calculated as number of IC HAE attacks occurring from Week 1 to Week 25, divided by the number of days the participant contributed to the period multiplied by 28 days. An HAE attack was defined as an event with signs or symptoms consistent with an attack in at least 1 of the locations: peripheral angioedema (cutaneous swelling involving an extremity, the face, neck, torso, and/or genitourinary region), abdominal angioedema (abdominal pain, with or without abdominal distention, nausea, vomiting, or diarrhea), laryngeal angioedema (stridor, dyspnea, difficulty speaking, difficulty swallowing, throat tightening, or swelling of the tongue, palate, uvula, or larynx).

    Week 1 to Week 25

Secondary Outcomes (7)

  • Time-Normalized IC HAE Attack Rate (Per Month) From Week 5 to Week 25

    Week 5 to Week 25

  • Percentage of IC HAE Attack-Free Participants From Week 5 to Week 25

    Week 5 to Week 25

  • Time-Normalized Moderate or Severe IC HAE Attack Rate (Per Month) From Week 5 to Week 25

    Week 5 to Week 25

  • Number of Participants With a Clinical Response From Week 5 to Week 25

    Week 5 to Week 25

  • IC HAE Attack Rate Requiring Acute HAE Therapy From Week 5 to Week 25

    Week 5 to Week 25

  • +2 more secondary outcomes

Study Arms (3)

Pooled Placebo

PLACEBO COMPARATOR

Participants with hereditary angioedema type I/type II (HAE-1/HAE-2) received placebo subcutaneously (SC) either every 4 weeks (Weeks 1, 5, 9, 13, 17, and 21) or 8 weeks (Weeks 1, 9, and 17)

Drug: Donidalorsen

Cohort A: Donidalorsen 80 mg

EXPERIMENTAL

Participants with HAE-1/HAE-2 received donidalorsen, 80 mg, SC, every 4 weeks at Weeks 1, 5, 9, 13, 17, and 21.

Drug: Donidalorsen

Cohort B: Donidalorsen 80 mg

EXPERIMENTAL

Participants with HAE-1/HAE-2 received donidalorsen, 80 mg, SC, every 8 weeks at Weeks 1, 9, and 17.

Drug: Placebo

Interventions

Donidalorsen was administered by SC injection.

Cohort A: Donidalorsen 80 mgPooled Placebo

Donidalorsen-matching placebo was administered by SC injection.

Cohort B: Donidalorsen 80 mg

Eligibility Criteria

Age12 Years+
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Participants, or their legally appointed and authorized representatives, must provide written and signed informed consent form (ICF)/assent
  • Participants must be aged ≥ 12 years at the time of informed consent and, as applicable, assent
  • Participants must have a documented diagnosis of hereditary angioedema type 1 (HAE-1)/hereditary angioedema type 2 (HAE-2)
  • Participants must:
  • Experience a minimum of 2 HAE attacks (confirmed by the Investigator) during the Screening Period
  • Be willing to complete the participant reported outcomes (PRO) assessments throughout the study
  • Participants must have access to, and the ability to use acute medication(s) to treat angioedema attacks

You may not qualify if:

  • Concurrent diagnosis of any other type of recurrent angioedema, including acquired, idiopathic angioedema or HAE with normal C1-INH (also known as HAE Type III)
  • Treatment with another investigational drug or biological agent within 1 month or 5 half-lives, whichever is longer, of Screening
  • Participated in a prior ISIS 721744 study
  • Exposure to any of the following medications:
  • Angiotensin-converting enzyme (ACE) inhibitors or any estrogen containing medications with systemic absorption within 4 weeks prior to Screening
  • Chronic prophylaxis with Takhzyro, Haegarda, Cinryze and Ruconest or Orladeyo within 5 half-lives prior to Screening
  • Recent history (3 years) of, or current drug or alcohol abuse

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (51)

Ionis Investigative Site

Scottsdale, Arizona, 85251, United States

Location

Ionis Investigative Site

San Diego, California, 92122, United States

Location

Ionis Investigative Site

Santa Monica, California, 90404, United States

Location

Ionis Investigative Site

Walnut Creek, California, 94598, United States

Location

Ionis Investigative Site

Colorado Springs, Colorado, 80907, United States

Location

Ionis Investigative Site

Tampa, Florida, 33613, United States

Location

Ionis Investigative Site

Kansas City, Kansas, 66205, United States

Location

Ionis Investigative Site

Boston, Massachusetts, 02114, United States

Location

Ionis Investigative Site

Ann Arbor, Michigan, 48109, United States

Location

Ionis Investigative Site

St Louis, Missouri, 63110, United States

Location

Ionis Investigative Site

Columbus, Ohio, 43235, United States

Location

Ionis Investigative Site

Toledo, Ohio, 43617, United States

Location

Ionis Investigative Site

Hershey, Pennsylvania, 17033, United States

Location

Ionis Investigative Site

Dallas, Texas, 75231, United States

Location

Ionis Investigative Site

Murray, Utah, 84107, United States

Location

Ionis Investigative Site

Brussels, 1020, Belgium

Location

Ionis Investigative Site

Brussels, 1200, Belgium

Location

Ionis Investigative Site

Edegem, 2650, Belgium

Location

Ionis Investigative Site

Sofia, 1431, Bulgaria

Location

Ionis Investigative Site

Sofia, 1680, Bulgaria

Location

Ionis Investigative Site

Ottawa, Ontario, K1G6C6, Canada

Location

Ionis Investigative Site

Edmonton, T6G 2G3, Canada

Location

Ionis Investigative Site

Odense, 5000, Denmark

Location

Ionis Investigative Site

La Tronche, 38700, France

Location

Ionis Investigative Site

Marseille, 13385, France

Location

Ionis Investigative Site

Paris, 75012, France

Location

Ionis Investigative Site

Berlin, 12203, Germany

Location

Ionis Investigative Site

Frankfurt, 60590, Germany

Location

Ionis Investigative Site

Munich, 81675, Germany

Location

Ionis Investigative Site

Ashkelon, 78278, Israel

Location

Ionis Investigative Site

Haifa, 3104802, Israel

Location

Ionis Investigative Site

Tel Aviv, 6423906, Israel

Location

Ionis Investigative Site

Catania, 95124, Italy

Location

Ionis Investigative Site

Milan, 20138, Italy

Location

Ionis Investigative Site

Napoli, 80131, Italy

Location

Ionis Investigative Site

Padua, 35128, Italy

Location

Ionis Investigative Site

Palermo, 90146, Italy

Location

Ionis Investigative Site

Amsterdam, 1105 AZ, Netherlands

Location

Ionis Investigative Site

Groningen, 9713 GZ, Netherlands

Location

Ionis Investigative Site

Krakow, 31-503, Poland

Location

Ionis Investigative Site

Barcelona, 08035, Spain

Location

Ionis Investigative Site

Barcelona, 8907, Spain

Location

Ionis Investigative Site

Madrid, 28046, Spain

Location

Ionis Investigative Site

Seville, 41013, Spain

Location

Ionis Investigative Site

Valencia, 46026, Spain

Location

Ionis Investigative Site

Ankara, 6230, Turkey (Türkiye)

Location

Ionis Investigative Site

Istanbul, 34093, Turkey (Türkiye)

Location

Ionis Investigative Site

Izmir, 35100, Turkey (Türkiye)

Location

Ionis Investigative Site

Birmingham, B9 5SS, United Kingdom

Location

Ionis Investigative Site

Bristol, BS10 5NB, United Kingdom

Location

Ionis Investigative Site

London, E1 1FR, United Kingdom

Location

Related Publications (1)

  • Riedl MA, Tachdjian R, Lumry WR, Craig T, Karakaya G, Gelincik A, Stobiecki M, Jacobs JS, Gokmen NM, Reshef A, Gompels MM, Manning ME, Bordone L, Newman KB, Treadwell S, Wang S, Yarlas A, Cohn DM; OASIS-HAE Team. Efficacy and Safety of Donidalorsen for Hereditary Angioedema. N Engl J Med. 2024 Jul 4;391(1):21-31. doi: 10.1056/NEJMoa2402478. Epub 2024 May 31.

MeSH Terms

Conditions

Angioedemas, Hereditary

Interventions

donidalorsen

Condition Hierarchy (Ancestors)

AngioedemaVascular DiseasesCardiovascular DiseasesHereditary Complement Deficiency DiseasesPrimary Immunodeficiency DiseasesGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesUrticariaSkin Diseases, VascularSkin DiseasesSkin and Connective Tissue DiseasesHypersensitivity, ImmediateHypersensitivityImmune System DiseasesImmunologic Deficiency Syndromes

Results Point of Contact

Title
Ionis Pharmaceuticals, Inc.
Organization
Ionis Pharmaceuticals, Inc.

Publication Agreements

PI is Sponsor Employee
No
Restriction Type
OTHER
Restrictive Agreement
Yes

Study Design

Study Type
interventional
Phase
phase 3
Allocation
RANDOMIZED
Masking
QUADRUPLE
Who Masked
PARTICIPANT, CARE PROVIDER, INVESTIGATOR, OUTCOMES ASSESSOR
Purpose
TREATMENT
Intervention Model
PARALLEL
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR
Expanded Access
Yes

Study Record Dates

First Submitted

November 18, 2021

First Posted

December 1, 2021

Study Start

December 3, 2021

Primary Completion

November 9, 2023

Study Completion

November 9, 2023

Last Updated

March 6, 2025

Results First Posted

March 6, 2025

Record last verified: 2025-02

Data Sharing

IPD Sharing
Will share

Ionis may share anonymized individual participant data, aggregated clinical data, and other types of data that support the results in this study. Data requests from qualified researchers will be considered once all three of the following criteria are met: (1) 12 months from marketing approval of the study drug in both the United States and European Union; (2) 18 months from conclusion of the study; and (3) 6 months from publication of study article. Access would be via a secure environment and is contingent upon approval of a research proposal and entry into an appropriate data use agreement. Requests to access data can be submitted via the website https://vivli.org/ourmember/ionis/.

More information

Locations