Long-term Safety and Tolerability of Iptacopan in Patients With Paroxysmal Nocturnal Hemoglobinuria

NCT ID: NCT04747613

Last Updated: 2025-03-19

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Clinical Phase

PHASE3

Total Enrollment

208 participants

Study Classification

INTERVENTIONAL

Study Start Date

2021-07-27

Study Completion Date

2027-10-19

Brief Summary

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This study is an open-label, single arm, multicenter, roll-over extension study to characterize long-term safety, tolerability and efficacy of iptacopan and to provide access to iptacopan to patients with PNH who have completed Novartis-sponsored Phase 2 or 3 studies with iptacopan

Detailed Description

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The purpose of this phase 3 open-label, single arm, multicenter study is to evaluate the long-term safety, tolerability and efficacy of iptacopan in patients with PNH and to provide access to patients who have completed (without tapering down) Phase 2 and Phase 3 trials and derived benefit from iptacopan treatment.

Conditions

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Paroxysmal Nocturnal Hemoglobinuria

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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Iptacopan

Participants will be receiving open label oral iptacopan 200 mg b.i.d monotherapy

Group Type EXPERIMENTAL

Iptacopan

Intervention Type DRUG

Taken orally b.i.d. Dosage supplied: 200 mg Dosage form: hard gelatin capsule Route of administration: oral

Interventions

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Iptacopan

Taken orally b.i.d. Dosage supplied: 200 mg Dosage form: hard gelatin capsule Route of administration: oral

Intervention Type DRUG

Other Intervention Names

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LNP023

Eligibility Criteria

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Inclusion Criteria

* Male and female participants ≥ 18 years of age with a diagnosis of PNH who have completed the treatment extension period (without tapering down) of Phase II iptacopan studies (CLNP023X2204, CLNP023X2201), Period 4 of LFG316X2201 or Phase III (CLNP023C12302 and CLNP023C12301) clinical studies at the time point of enrollment visit in this roll over extension.
* Prior vaccinations against Neisseria meningitidis, Streptococcus pneumoniae and Haemophilus influenzae infections
* Per investigator's clinical judgement benefit from continued treatment with iptacopan and has been clinically stable on iptacopan monotherapy for at least 3 months

Exclusion Criteria

* Any comorbidity or medical condition (including but not limited to any active systemic bacterial, viral or fungal infection or malignancy) that, in the opinion of the investigator, could put the subject at increased risk or potentially confound study data.
* History of recurrent invasive infections caused by encapsulated organisms, such as Neisseria meningitidis, Streptococcus pneumoniae or Haemophilus influenzae
* History of hematopoietic stem cell transplantation
Minimum Eligible Age

18 Years

Maximum Eligible Age

100 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Novartis Pharmaceuticals

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Novartis Pharmaceuticals

Role: STUDY_DIRECTOR

Novartis Pharmaceuticals

Locations

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City Of Hope

Duarte, California, United States

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USC Norris Cancer Center

Los Angeles, California, United States

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Univ of California Irvine (Chao Family Comprehensive Cancer Center)

Orange, California, United States

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Lakes Research

Miami Lakes, Florida, United States

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Augusta University

Augusta, Georgia, United States

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Montefiore Medical Center

The Bronx, New York, United States

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Cleveland Clinic Foundation

Cleveland, Ohio, United States

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Prisma Health Upstate

Greenville, South Carolina, United States

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Novartis Investigative Site

Santo André, São Paulo, Brazil

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Novartis Investigative Site

São Paulo, São Paulo, Brazil

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Novartis Investigative Site

Beijing, , China

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Novartis Investigative Site

Tianjin, , China

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Tianjin, , China

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Ostrava, Poruba, Czechia

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Novartis Investigative Site

Brno Bohunice, , Czechia

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Novartis Investigative Site

Lille, , France

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Nantes, , France

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Nice, , France

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Paris, , France

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Toulouse, , France

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Aachen, , Germany

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Dresden, , Germany

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Essen, , Germany

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Hamburg, , Germany

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Riesa, , Germany

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Ulm, , Germany

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Ascoli Piceno, AP, Italy

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Avellino, AV, Italy

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Florence, FI, Italy

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Milan, MI, Italy

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Roma, RM, Italy

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Torino, TO, Italy

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Bassano del Grappa, Vicenza, Italy

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Nagoya, Aichi-ken, Japan

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Fukushima, Fukushima, Japan

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Kanazawa, Ishikawa-ken, Japan

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Isehara, Kanagawa, Japan

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Suwa, Nagano, Japan

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Suita, Osaka, Japan

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Shinjuku Ku, Tokyo, Japan

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Kyoto, , Japan

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Niigata, , Japan

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Vilnius, , Lithuania

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Kota Kinabalu, Sabah, Malaysia

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Kuching, Sarawak, Malaysia

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Nijmegen, , Netherlands

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Singapore, , Singapore

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Seoul, , South Korea

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Seoul, , South Korea

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Donostia / San Sebastian, Basque Country, Spain

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Barcelona, Catalonia, Spain

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Santiago de Compostela, Galicia, Spain

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Novartis Investigative Site

Hualien City, , Taiwan

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Novartis Investigative Site

Taipei, , Taiwan

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Novartis Investigative Site

Istanbul, , Turkey (Türkiye)

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Novartis Investigative Site

Leeds, West Yorkshire, United Kingdom

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Novartis Investigative Site

London, , United Kingdom

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Countries

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United States Brazil China Czechia France Germany Italy Japan Lithuania Malaysia Netherlands Singapore South Korea Spain Taiwan Turkey (Türkiye) United Kingdom

References

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DeCastro C, Sheinberg P, Han B, Vallow S, Bermann G, Dhalke M, Kumar R, Dickie G, Galipeau N, Lamoureux R, Rupinski K, Lowe C, Nieves A, de Fontbrune FS, de Latour RP. Patient-Reported Meaningful Change in Symptoms and Impacts of Paroxysmal Nocturnal Hemoglobinuria (PNH) in Three Phase III Clinical Trials of Iptacopan. Patient. 2025 Jul 22. doi: 10.1007/s40271-025-00755-5. Online ahead of print.

Reference Type DERIVED
PMID: 40694294 (View on PubMed)

Other Identifiers

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CLNP023C12001B

Identifier Type: -

Identifier Source: org_study_id

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