Atypical Hemolytic Uremic SyndromePhase 3NCT05935215
Efficacy and Safety of Switching From Anti-C5 Antibody Treatment to Iptacopan Treatment in Study Participants With Atypical Hemolytic Uremic Syndrome (aHUS)
A Phase 3 study testing Iptacopan in people with Atypical Hemolytic Uremic Syndrome, run by Novartis Pharmaceuticals at 31 sites in 8 countries.
Trial summary
The purpose of this Phase 3 study is to evaluate the efficacy and safety of iptacopan upon switching from anti-C5 antibody to iptacopan treatment in study participants with aHUS. Read more about this study
- Who is it for?
- Ages 18 to 100 years
- Conditions the study is for
- Atypical Hemolytic Uremic Syndrome
- What is being tested?
- Iptacopan
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 50 participants
- Where
- 31 sitesin 8 countries
- Study dates
- 28 Feb 2024to 19 Jul 2029
- Phase
- Phase 3
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 to 100 years
- All sexes
- No healthy volunteers
- Adult, Older adult
Who may be able to join
- Male and female adult participants ≥ 18 years of age with diagnosis of aHUS for whom etiologies of other types of TMA and non-aHUS kidney disease have been excluded.
- •. Currently on the recommended (as per label) dosage regimen of anti-C5 antibody treatment, for at least 3 months prior to entering the screening period.
- In the opinion of the investigator the participant has responded to anti-C5 antibodytreatment prior to screening and has clinical evidence of response (in absence of PE/PI) during the Screening period.
- Clinical evidence of response to anti-C5 antibody treatment (in absence of PE/PI) confirmed during the Screening period by central laboratory at two visits 12 weeks apart. Clinical evidence of response is defined as:
- Hematological normalization in platelet count ≥150 x 10^9/L and LDH below upper limit of normal [ULN], and
- Stable kidney function as defined by serum creatinine values within ±15% during the Screening period
- Vaccination against Neisseria meningitidis and Streptococcus pneumoniae infections is required prior to the start of treatment with iptacopan.
- If not received previously or if a booster is required, vaccination against Haemophilus influenzae infection, should be given, if available and according to local regulations.
Who cannot join
- History of aHUS disease relapse while on anti-C5 antibody treatment.
- eGFR < 30 ml/min/1.73m^2
- Active infection or history of recurrent invasive infections caused by encapsulated bacteria, i.e., meningococcus, pneumococcus (eg., N. meningitidis, S. pneumoniae) or H. influenzae.
- Participants with sepsis or active systemic bacterial, viral (including COVID-19) or fungal infection within 14 days prior to study treatment administration.
- Kidney, bone marrow transplant (BMT)/hematopoietic stem cell transplant (HSCT), heart, lung, small bowel, pancreas, liver transplantation or any other cell or solid organ transplantation
- Female patients who are pregnant or breastfeeding, or intending to conceive during the course of the study
- Any medical condition deemed likely to interfere with the patient's participation in the study
Trial locations and contacts
31 sites in 8 countries. Contact the study team or a site near you to ask about taking part.
Novartis Pharmaceuticals contact
31 sites in 8 countries
France6 sites, 6 recruiting
- Recruiting
Novartis Investigative Site
Bordeaux, 33076
- Recruiting
Novartis Investigative Site
Paris, 75015
- Recruiting
Novartis Investigative Site
Paris, 75970
- Recruiting
Novartis Investigative Site
Rouen, 76031
- Recruiting
Novartis Investigative Site
Toulouse, 31054
- Recruiting
Novartis Investigative Site
Tours, 37044
Spain6 sites, 6 recruiting
- Recruiting
Novartis Investigative Site
Barcelona, 08036
- Recruiting
Novartis Investigative Site
Córdoba, 14004
- Recruiting
Novartis Investigative Site
Málaga, 29010
- Recruiting
Novartis Investigative Site
Santiago Compostela, A Coruna, 15706
- Recruiting
Novartis Investigative Site
Seville, 41013
- Recruiting
Novartis Investigative Site
Valencia, 46026
China4 sites
- Active, not recruiting
Novartis Investigative Site
Beijing, 100034
- Active, not recruiting
Novartis Investigative Site
Beijing, 100730
- Withdrawn
Novartis Investigative Site
Nanjing, Jiangsu, 210009
- Withdrawn
Novartis Investigative Site
Shanghai, 200025
Turkey (Türkiye)4 sites, 3 recruiting
- Recruiting
Novartis Investigative Site
Ankara, Yenimahalle, 06500
- Withdrawn
Novartis Investigative Site
Izmir, Balcova, 35340
- Recruiting
Novartis Investigative Site
Köseköy, Kocaeli, 41380
- Recruiting
Novartis Investigative Site
Mersin, Yenisehir, 33110
Italy3 sites, 3 recruiting
- Recruiting
Novartis Investigative Site
Milan, MI, 20122
- Recruiting
Novartis Investigative Site
Ranica, BG, 24020
- Recruiting
Novartis Investigative Site
Roma, RM, 00168
Japan3 sites, 3 recruiting
- Recruiting
Novartis Investigative Site
Bunkyo Ku, Tokyo, 113-8655
- Recruiting
Novartis Investigative Site
Iruma-gun, Saitama, 3500495
- Recruiting
Novartis Investigative Site
Matsumoto-shi, Nagano, 3908510
United Kingdom3 sites, 3 recruiting
- Recruiting
Novartis Investigative Site
Glasgow, Scotland, G51 4TF
- Recruiting
Novartis Investigative Site
London, NW1 2BU
- Recruiting
Novartis Investigative Site
Newcastle upon Tyne, Tyne and Wear, NE7 7DN
Germany2 sites, 2 recruiting
- Recruiting
Novartis Investigative Site
Essen, 45147
- Recruiting
Novartis Investigative Site
Kiel, 24105
About this study
Official title: A Multicenter, Single Arm, Open-label Study to Evaluate Efficacy and Safety of Switching From Anti-C5 Antibody Treatment to Iptacopan Treatment in Study Participants With aHUS
The purpose of this Phase 3 study is to evaluate the efficacy and safety of iptacopan upon switching from anti-C5 antibody to iptacopan treatment in study participants with aHUS.
Read the detailed description
The study is designed as a multicenter, single-arm, open label study to evaluate the efficacy and safety of iptacopan upon switching from anti-C5 antibody to iptacopan treatment in participants with aHUS. It consists of a screening period of up to 14 weeks followed by a 12-Month Core Treatment period and 12-Month Extension Treatment period.
The study will assess the effects of iptacopan on a range of efficacy assessments relevant to aHUS.
- Conditions
- Atypical Hemolytic Uremic Syndrome
- Being tested
- Iptacopan
- Keywords
- Atypical Hemolytic Uremic Syndrome, aHUS,, thrombotic microangiopathy, TMA
- Medical subject headings
- Atypical Hemolytic Uremic Syndrome, Thrombotic Microangiopathies
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
IptacopanDrug
Also called LNP023
Open Label
| Study group | Role | What they receive |
|---|---|---|
| iptacopan 200 mg b.i.d. | Experimental | open label arm of iptacopan 200 mg b.i.d. Receives: Drug: Iptacopan |
What is being measured
The primary outcome is the main question the study is designed to answer.
Percentage of participants free of TMA manifestation
Absence of thrombotic microangiopathy (TMA) manifestation, without use of anti-C5 antibody, during the 12 months of iptacopan treatment following the switch of treatment from an anti-C5 antibody to iptacopan treatment.
Measured: 12 months
Secondary outcomes (12)
Percentage of participants free of TMA manifestation in study participants with functionally significant mutations in complement genes or positive anti FH antibodies
Absence of thrombotic microangiopathy (TMA) manifestation in study participants with functionally significant mutations in complement genes or positive anti FH antibodies, without the use of anti-C5 antibody during iptacopan treatment following the switch of treatment from an anti-C5 antibody to iptacopan treatment.
Measured: 12 months, 24 months
Percentage of participants free of TMA manifestation
Absence of thrombotic microangiopathy (TMA) manifestation, without use of anti-C5 antibody, during the 24 months of iptacopan treatment following the switch of treatment from an anti-C5 antibody to iptacopan treatment.
Measured: 24 months
Time to TMA manifestation
Time to thrombotic microangiopathy (TMA) manifestation
Measured: 12 months, 24 months
Change from baseline in platelets
Change from baseline in platelets at month 12 and month 24.
Measured: Baseline, month 12, month 24
Change from baseline in LDH
Change from baseline in lactate dehydrogenase (LDH) at month 12 and month 24.
Measured: Baseline, month 12, month 24
Change from baseline in hemoglobin
Change from baseline in hemoglobin at month 12 and month 24.
Measured: Baseline, month 12, month 24
Change from baseline in serum creatinine
Change from baseline in serum creatinine at month 12 and month 24.
Measured: Baseline, month 12, month 24
Change from baseline in UPCR
Change from baseline in urine protein to creatinine ratio (UPCR) at month 12 and month 24.
Measured: Baseline, month 12, month 24
Change from baseline in eGFR
Change from baseline in estimated glomerular filtration rate (eGFR) at month 12 and month 24.
Measured: Baseline, month 12, month 24
Change from baseline in CKD stage
Change from baseline in chronic kidney disease (CKD) stage at month 12 and month 24.
Measured: Baseline, month 12, month 24
Number of participants who require dialysis
Dialysis requirement status (Yes/ No)
Measured: month 12 and month 24
Percentage of participants with TMA related events.
Percentage of participants with thrombotic microangiopathy (TMA) related events.
Measured: month 12 and month 24
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted7 Jul 2023
- Study start28 Feb 2024
- Primary completion21 Jul 2028 (estimated)
- Study completion19 Jul 2029 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Atypical Hemolytic Uremic SyndromeStudies of the same condition, open and under way.
- More trials run by Novartis PharmaceuticalsThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase 3
- Primary purpose
- Treatment
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Enrolment
- 50 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Novartis Pharmaceuticals
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
- Investigators
- Novartis Pharmaceuticals, Study director, Novartis Pharmaceuticals
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05935215
- Sponsor's protocol ID
- CLNP023F12302
- Status last verified
- Apr 2026
- First submitted
- 29 Jun 2023
- Last updated
- 29 Apr 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- Yes
- FDA-regulated device
- No
- Individual data sharing
- Yes: Novartis is committed to sharing with qualified external researchers, access to patient-level data and supporting clinical documents from eligible studies. These requests are reviewed and approved by an independent review panel on the basis of scientific merit. All data provided is anonymized to respect the privacy of patients who have participated in the trial in line with applicable laws and regulations. This trial data availability is according to the criteria and process described on www.clinicalstudydatarequest.com
- Expanded access
- Available
Study at a glance
From the registry record, last updated by the sponsor on 29 Apr 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- A Multicenter, Single Arm, Open-label Study to Evaluate Efficacy and Safety of Switching From Anti-C5 Antibody Treatment to Iptacopan Treatment in Study Participants With aHUS
- ClinicalTrials.gov ID
- NCT05935215
- Acronym / sponsor ID
- CLNP023F12302
- Conditions
- Atypical Hemolytic Uremic Syndrome
- Keywords
- Atypical Hemolytic Uremic Syndrome, aHUS,, thrombotic microangiopathy, TMA
- Phase
- Phase 3
- Study type
- Interventional
- Recruitment status
- Recruiting
- Enrolment
- 50 participants (estimated)
- Lead sponsor
- Novartis PharmaceuticalsIndustry (pharma, biotech, devices)
- Study start
- 28 Feb 2024 (actual)
- Primary completion
- 21 Jul 2028 (estimated)
- Study completion
- 19 Jul 2029 (estimated)
- First posted
- 7 Jul 2023 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The purpose of this Phase 3 study is to evaluate the efficacy and safety of iptacopan upon switching from anti-C5 antibody to iptacopan treatment in study participants with aHUS.
Detailed description
The study is designed as a multicenter, single-arm, open label study to evaluate the efficacy and safety of iptacopan upon switching from anti-C5 antibody to iptacopan treatment in participants with aHUS. It consists of a screening period of up to 14 weeks followed by a 12-Month Core Treatment period and 12-Month Extension Treatment period.
The study will assess the effects of iptacopan on a range of efficacy assessments relevant to aHUS.
Study design
- Primary purpose
- Treatment
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| iptacopan 200 mg b.i.d. | Experimental | Drug: Iptacopanopen label arm of iptacopan 200 mg b.i.d. |
Who may qualify
- Ages
- 18 to 100 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (8 listed)
- Male and female adult participants ≥ 18 years of age with diagnosis of aHUS for whom etiologies of other types of TMA and non-aHUS kidney disease have been excluded.
- •. Currently on the recommended (as per label) dosage regimen of anti-C5 antibody treatment, for at least 3 months prior to entering the screening period.
- In the opinion of the investigator the participant has responded to anti-C5 antibodytreatment prior to screening and has clinical evidence of response (in absence of PE/PI) during the Screening period.
- Clinical evidence of response to anti-C5 antibody treatment (in absence of PE/PI) confirmed during the Screening period by central laboratory at two visits 12 weeks apart. Clinical evidence of response is defined as:
- Hematological normalization in platelet count ≥150 x 10^9/L and LDH below upper limit of normal [ULN], and
Key exclusion criteria (7 listed)
- History of aHUS disease relapse while on anti-C5 antibody treatment.
- eGFR < 30 ml/min/1.73m^2
- Active infection or history of recurrent invasive infections caused by encapsulated bacteria, i.e., meningococcus, pneumococcus (eg., N. meningitidis, S. pneumoniae) or H. influenzae.
- Participants with sepsis or active systemic bacterial, viral (including COVID-19) or fungal infection within 14 days prior to study treatment administration.
- Kidney, bone marrow transplant (BMT)/hematopoietic stem cell transplant (HSCT), heart, lung, small bowel, pancreas, liver transplantation or any other cell or solid organ transplantation
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| IptacopanAlso: LNP023Open Label | Drug | iptacopan 200 mg b.i.d. |
Primary outcome
Percentage of participants free of TMA manifestation
Time frame: 12 months
Absence of thrombotic microangiopathy (TMA) manifestation, without use of anti-C5 antibody, during the 12 months of iptacopan treatment following the switch of treatment from an anti-C5 antibody to iptacopan treatment.
12 secondary outcomes
Percentage of participants free of TMA manifestation in study participants with functionally significant mutations in complement genes or positive anti FH antibodies
Time frame: 12 months, 24 months
Percentage of participants free of TMA manifestation
Time frame: 24 months
Time to TMA manifestation
Time frame: 12 months, 24 months
Change from baseline in platelets
Time frame: Baseline, month 12, month 24
Change from baseline in LDH
Time frame: Baseline, month 12, month 24
Change from baseline in hemoglobin
Time frame: Baseline, month 12, month 24
Change from baseline in serum creatinine
Time frame: Baseline, month 12, month 24
Change from baseline in UPCR
Time frame: Baseline, month 12, month 24
Change from baseline in eGFR
Time frame: Baseline, month 12, month 24
Change from baseline in CKD stage
Time frame: Baseline, month 12, month 24
Number of participants who require dialysis
Time frame: month 12 and month 24
Percentage of participants with TMA related events.
Time frame: month 12 and month 24
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 29 Apr 2026.
- Individual participant dataSharing planned: Yes. Novartis is committed to sharing with qualified external researchers, access to patient-level data and supporting clinical documents from eligible studies. These requests are reviewed and approved by an independent review panel on the basis of scientific merit. All data provided is anonymized to respect the privacy of patients who have participated in the trial in line with applicable laws and regulations. This trial data availability is according to the criteria and process described on www.clinicalstudydatarequest.com
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Novartis Pharmaceuticals contact
Novartis Pharmaceuticals study director
Novartis Pharmaceuticals
31 sites in 8 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A Phase 3 study testing Iptacopan in people with Atypical Hemolytic Uremic Syndrome, run by Novartis Pharmaceuticals at 31 sites in 8 countries.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 8 inclusion and 7 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 29 Apr 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 31 sites in France, Spain, China, Turkey (Türkiye), Italy and 3 more countries. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
What does this phase mean?
Phase 3 studies compare the treatment with the current standard treatment or a placebo in a large group, to confirm how well it works and watch for side effects.
Not every study follows the same path, and some studies (observational studies, device studies) have no phase.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Novartis Pharmaceuticals (1-888-669-6682, novartis.email@novartis.com), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Percentage of participants free of TMA manifestation (time frame: 12 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 29 Apr 2026.