Clinical trial • Phase IV • Oncology|Rare Disease

NIROGACESTAT HYDROBROMIDE for Desmoid tumour (Aggressive fibromatosis)

Phase IV trial of NIROGACESTAT HYDROBROMIDE for Desmoid tumour (Aggressive fibromatosis). open-label, none/not specified-controlled. 47 participants.

Overview

Trial Therapeutic Area
Oncology|Rare Disease
Trial Disease
Desmoid tumour (Aggressive fibromatosis)
Trial Stage
Phase IV
Drug Modality
Small molecule
Orphan Drug
Yes

Key dates

Initial CTIS Submission Date
05-06-2025
First CTIS Authorization Date
15-09-2025

Trial design

open-label, none/not specified-controlled Phase IV trial in Germany, Spain, Italy and others.

Open Label
Yes
Comparator
None/Not specified
Target Sample Size
47

Eligibility

Recruits 47 Vulnerable population flag selected. Study enrols adult postpubertal premenopausal females only; inclusion criterion 8 requires participants to be "Capable of giving signed informed consent." Consent is provided by the participant (no minor assent procedures described). Language-specific ICFs and pregnancy-specific ICFs are provided in the trial documents..

Pregnancy Exclusion
2.Participant is eligible to participate if she is not pregnant or breastfeeding, and the following conditions apply: - Is of childbearing potential but is abstinent or using at least 1 highly effective contraceptive method. - The participant has not harvested or donated eggs for the purpose of reproduction for at least 90 days prior to the first dose of nirogacestat and agrees to not harvest or donate eggs for the purpose of reproduction during the Treatment and Clinical Follow-up Periods.
Vulnerable Population
Vulnerable population flag selected. Study enrols adult postpubertal premenopausal females only; inclusion criterion 8 requires participants to be "Capable of giving signed informed consent." Consent is provided by the participant (no minor assent procedures described). Language-specific ICFs and pregnancy-specific ICFs are provided in the trial documents.

Inclusion criteria

  • {"criterion_text":"- 1.Participant must be female, postpubertal aged ≥18 and ≤40 years of age at the time of signing the informed consent and premenopausal at baseline.\n- 2.Participant is eligible to participate if she is not pregnant or breastfeeding, and the following conditions apply: - Is of childbearing potential but is abstinent or using at least 1 highly effective contraceptive method. - The participant has not harvested or donated eggs for the purpose of reproduction for at least 90 days prior to the first dose of nirogacestat and agrees to not harvest or donate eggs for the purpose of reproduction during the Treatment and Clinical Follow-up Periods.\n- 3.Participant has histologically confirmed DT/AF with symptomatic or progressive disease requiring systemic treatment.\n- 4.Participants who have received prior chemotherapy or radiation must meet the definition of premenopausal ≥2 weeks after the end of the final cycle of chemotherapy or final radiation treatment. Participants who have received prior gonadotoxic chemotherapy or pelvic radiotherapy are not eligible for this study.\n- 5.Participant has an Eastern Cooperative Oncology Group (ECOG) performance status ≤2 at screening.\n- 6.Participant has adequate organ and bone marrow function.\n- 7.Participant can swallow tablets and has no gastrointestinal conditions affecting absorption.\n- 8.Capable of giving signed informed consent, which includes compliance with the requirements and restrictions listed in the informed consent form and in this protocol."}

Exclusion criteria

  • {"criterion_text":"- 1.Participant has known malabsorption syndrome or preexisting gastrointestinal conditions that may impair absorption of nirogacestat.\n- 10.Participant is currently enrolled or was enrolled within 28 days of first dose of study treatment in another clinical study with any investigational drug or device. Participationin observational studies may be permitted with prior approval from the medical monitor/sponsor.\n- 11.Participant has a history of heavy tobacco smoking (defined as ≥20 pack years) and/or is a current smoker (>1 pack per day) at the time of informed consent.\n- 12.Participant has experienced other severe acute or chronic medical or psychiatric conditions, including recent or active suicidal ideation or behavior, or a laboratory abnormality that may increase the risk associated with study participation or study treatment administration or may interfere with the interpretation of study results and, in the judgment of the investigator, would make the participant inappropriate for entry into this study.\n- 13.Participant has known hypersensitivity to the active substance or to any of the excipients of nirogacestat.\n- 14.Participant is unable to comply with study-related procedures including, but not limited to the following: the completion of a menstrual diary and electronic patient-reported outcomes and the ability to return to the clinic for hormone level blood draws timed to the menstrual cycle (Day 1-5) at the required visits.\n- 2.Participant has experienced any of the following within 6 months of signing informed consent: -Clinically significant cardiac disease (New York Heart Association Class III or IV) -Myocardial infarction -Severe/unstable angina -Coronary/peripheral artery bypass graft -Symptomatic congestive heart failure -Cerebrovascular accident -Transient ischemic attack -Symptomatic pulmonary embolism\n- 3.Participant has had lymphoma, leukemia, or any malignancy within the past 5 years at the time of informed consent, except for any locally recurring cancer that has been treated curatively with no evidence of metastatic disease for 3 years at the time of informed consent.\n- 4.Participant has known severe hepatic impairment.\n- 5.Participant previously received or is currently receiving therapy with gamma secretase (GS) inhibitors or anti-Notch antibody therapy.\n- 6.Participant is currently using any treatment for DT/AF including tyrosine kinase inhibitors (TKIs) or any investigational treatment within 28 days (or 5 half-lives, whichever is longer) prior to the first dose of study treatment. All toxicities from prior therapy must be resolved to Grade ≤1 or clinical baseline prior to the first dose of study treatment.\n- 7.Participant is currently using or anticipates using food or drugs that are known strong or moderate cytochrome P450 (CYP) 3A4 inhibitors or strong or moderate CYP3A inducers within 14 days or 5 half-lives (whichever is longer) prior to the first dose of study treatment.\n- 8.Participants has a history of polycystic ovary syndrome, hypothalamic amenorrhea, severe endometriosis involving ovaries, family history of primary ovarian insufficiency, any chromosomal abnormality, mutation, gene variant, or medical condition associated with early/premature menopause, including a history of OT while on a TKI.\n- 9.Participant is currently using or has used hormonal contraception or ovarian suppression within 90 days prior to the first dose of study treatment."}

Endpoints

Primary endpoints

  • {"endpoint_text":"- Ovarian function recovery rate of OT TEAEs. Ovarian function recovery is defined as achieving the resumption of ≥2 consecutive menstrual periods and an follicle stimulating hormone (FSH) level <30 mIU/mL with concomitant estradiol <80 pg/mL, OR resumption of ≥2 consecutive menstrual periods and anti-mullerian hormone (AMH) level within normal range adjusted for age and pretreatment baseline, OR a positive serum beta-human chorionic gonadotropin (β-HCG) pregnancy test.","definition_or_measurement_approach":"Ovarian function recovery defined as: resumption of ≥2 consecutive menstrual periods AND (FSH <30 mIU/mL with estradiol <80 pg/mL) OR (resumption of ≥2 consecutive menstrual periods AND AMH within age-adjusted normal range and pretreatment baseline) OR positive serum β-HCG pregnancy test. Measurement via menstrual history and laboratory hormone tests (FSH, estradiol, AMH, β-HCG)."}

Secondary endpoints

  • {"endpoint_text":"- 1.Incidence of OT TEAEs. OT is defined as new onset amenorrhea lasting ≥3 consecutive menstrual periods, FSH level ≥30 mIU/mL, AND a negative β-HCG pregnancy test.","definition_or_measurement_approach":"Incidence measured by clinical assessment of menstruation, FSH laboratory levels (≥30 mIU/mL) and negative β-HCG pregnancy test."}
  • {"endpoint_text":"- 2.Time to ovarian function recovery in participants with a TEAE of OT.","definition_or_measurement_approach":"Time-to-event measured from onset of OT TEAE to meeting ovarian function recovery criteria (as per primary endpoint definitions)."}
  • {"endpoint_text":"- 3.Safety endpoints will include incidence of TEAEs, changes in laboratory parameters including hormones, vital signs, and physical examination findings. Tolerability will be assessed according to toxicities graded by National Cancer Institute (NCI) Common Terminology Criteria for Adverse Events (CTCAE) v5.0.","definition_or_measurement_approach":"Safety assessed by recording TEAEs, laboratory tests including hormone panels, vital signs, physical exams; grading per NCI CTCAE v5.0."}

Recruitment

Planned Sample Size
47
Recruitment Window Months
36
Consent Approach
Informed consent must be signed by the participant (inclusion criterion 8: 'Capable of giving signed informed consent'). Participant-facing information and ICF documents are provided (multiple language versions present in the dossier: English, Spanish, Italian, Dutch, German and French variants are included among submitted SIS/ICF and patient-facing documents). Pregnancy-specific ICFs and addenda are available. No assent process for minors is described (study enrols adults ≥18).

Geography

Total Number Of Sites
20
Total Number Of Participants
47

Germany

Earliest CTIS Part Ii Submission Date
19-08-2025
Latest Decision Or Authorization Date
19-02-2026
Processing Time Days
184
Number Of Sites
1
Number Of Participants
4

Sites

Site Name
Heidelberg University
Department Name
Interdisciplinary Tumor Center, Universitätsklinikum Mannheim (UMM)
Principal Investigator Name
Bernd Kasper
Principal Investigator Email
bernd.kasper@umm.de
Contact Person Name
Bernd Kasper
Contact Person Email
bernd.kasper@umm.de

Spain

Earliest CTIS Part Ii Submission Date
17-09-2025
Latest Decision Or Authorization Date
20-02-2026
Processing Time Days
156
Number Of Sites
8
Number Of Participants
22

Sites

Site Name
Hospital Universitario La Paz
Department Name
Oncology
Principal Investigator Name
Andres Redondo Sanchez
Principal Investigator Email
aredondo12@gmail.com
Contact Person Name
Andres Redondo Sanchez
Contact Person Email
aredondo12@gmail.com
Site Name
Institut Catala D'oncologia
Department Name
Oncology
Principal Investigator Name
Laura Jimenez Colomo
Principal Investigator Email
ljcolomo@iconcologia.net
Contact Person Name
Laura Jimenez Colomo
Contact Person Email
ljcolomo@iconcologia.net
Site Name
Hospital Universitario Fundacion Jimenez Diaz
Department Name
Oncology
Principal Investigator Name
Nadia Hindi Muniz
Principal Investigator Email
nhindi@atbsarc.org
Contact Person Name
Nadia Hindi Muniz
Contact Person Email
nhindi@atbsarc.org
Site Name
Hospital General Universitario Gregorio Maranon
Department Name
Oncology
Principal Investigator Name
Rosa Alvarez
Principal Investigator Email
rosa.alvarez.al@gmail.com
Contact Person Name
Rosa Alvarez
Contact Person Email
rosa.alvarez.al@gmail.com
Site Name
Hospital Universitario Y Politecnico La Fe
Department Name
Oncology
Principal Investigator Name
Roberto Diaz Beveridge
Principal Investigator Email
diaz_rob@gva.es
Contact Person Name
Roberto Diaz Beveridge
Contact Person Email
diaz_rob@gva.es
Site Name
Hospital De La Santa Creu I Sant Pau
Department Name
Oncology
Principal Investigator Name
Ana Sebio Garcia
Principal Investigator Email
asebio@santpau.cat
Contact Person Name
Ana Sebio Garcia
Contact Person Email
asebio@santpau.cat
Site Name
Hospital Universitario Miguel Servet
Department Name
Oncology
Principal Investigator Name
Javier Martinez Trufero
Principal Investigator Email
jmtrufero@seom.org
Contact Person Name
Javier Martinez Trufero
Contact Person Email
jmtrufero@seom.org
Site Name
Hospital Universitario 12 De Octubre
Department Name
Oncology
Principal Investigator Name
Aranzazu Manzano Fernández
Principal Investigator Email
aranzazu.manzano@salud.madrid.org
Contact Person Name
Aranzazu Manzano Fernández

Italy

Earliest CTIS Part Ii Submission Date
28-08-2025
Latest Decision Or Authorization Date
25-03-2026
Processing Time Days
209
Number Of Sites
7
Number Of Participants
10

Sites

Site Name
Fondazione Policlinico Universitario Campus Bio-medico In Forma A Bbreviata Fon
Department Name
Medical Oncology
Principal Investigator Name
Bruno Vincenzi
Principal Investigator Email
b.vincenzi@policlinicocampus.it
Contact Person Name
Bruno Vincenzi
Site Name
Istituto Romagnolo Per Lo Studio Dei Tumori Dino Amadori IRST S.r.l.
Department Name
Medical Oncology
Principal Investigator Name
Loredana Gurrieri
Principal Investigator Email
lorena.gurrieri@irst.emr.it
Contact Person Name
Loredana Gurrieri
Contact Person Email
lorena.gurrieri@irst.emr.it
Site Name
Istituto Ortopedico Rizzoli
Department Name
Medical Oncology
Principal Investigator Name
Giorgio Frega
Principal Investigator Email
giorgio.frega@ior.it
Contact Person Name
Giorgio Frega
Contact Person Email
giorgio.frega@ior.it
Site Name
Istituto Di Candiolo Fondazione Del Piemonte Per L'Oncologia IRCCS
Department Name
Medical Oncology
Principal Investigator Name
Giovanni Grignani
Principal Investigator Email
giovanni.grignani@ircc.it
Contact Person Name
Giovanni Grignani
Contact Person Email
giovanni.grignani@ircc.it
Site Name
Azienda Ospedaliero-Universitaria Di Bologna IRCCS Istituto Di Ricerca E Di Cura A Carattere Scientifico
Department Name
Medical Oncology
Principal Investigator Name
Maria Abbondanza Pantaleo
Principal Investigator Email
maria.pantaleo@unibo.it
Contact Person Name
Maria Abbondanza Pantaleo
Contact Person Email
maria.pantaleo@unibo.it
Site Name
Fondazione IRCCS Istituto Nazionale Dei Tumori
Department Name
Medical Oncology
Principal Investigator Name
Silvia Stacchiotti
Principal Investigator Email
Silvia.Stacchiotti@istitutotumori.mi.it
Contact Person Name
Silvia Stacchiotti
Site Name
IRCCS Istituto Nazionale Tumori Fondazione Pascale
Department Name
Sarcomas and Rare Tumor Unit
Principal Investigator Name
Salvatore Tafuto
Principal Investigator Email
s.tafuto@istitutotumori.na.it
Contact Person Name
Salvatore Tafuto
Contact Person Email
s.tafuto@istitutotumori.na.it

Netherlands

Earliest CTIS Part Ii Submission Date
19-08-2025
Latest Decision Or Authorization Date
20-02-2026
Processing Time Days
185
Number Of Sites
3
Number Of Participants
7

Sites

Site Name
Erasmus Universitair Medisch Centrum Rotterdam (Erasmus MC)
Department Name
Medical Oncology
Principal Investigator Name
Fredericus Albert Louis Maria Eskens
Principal Investigator Email
f.eskens@erasmusmc.nl
Contact Person Name
Fredericus Albert Louis Maria Eskens
Contact Person Email
f.eskens@erasmusmc.nl
Site Name
Het Nederlands Kanker Instituut-Antoni van Leeuwenhoek Ziekenhuis Stichting
Department Name
Medical Oncology
Principal Investigator Name
Winette van der Graaf
Principal Investigator Email
w.vd.graaf@nki.nl
Contact Person Name
Winette van der Graaf
Contact Person Email
w.vd.graaf@nki.nl
Site Name
Leids Universitair Medisch Centrum (LUMC)
Department Name
Medical Oncology
Principal Investigator Name
André Johan Gelderblom
Principal Investigator Email
A.J.Gelderblom@lumc.nl
Contact Person Name
André Johan Gelderblom
Contact Person Email
A.J.Gelderblom@lumc.nl

Belgium

Earliest CTIS Part Ii Submission Date
26-08-2025
Latest Decision Or Authorization Date
17-02-2026
Processing Time Days
175
Number Of Sites
1
Number Of Participants
4

Sites

Site Name
Cliniques Universitaires Saint-Luc
Department Name
Medical Oncology
Principal Investigator Name
Filomena Mazzeo
Principal Investigator Email
filomena.mazzeo@saintluc.uclouvain.be
Contact Person Name
Filomena Mazzeo

Sponsor

Primary sponsor

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

Contract research organisations

Name
MEDPACE LABORATORIES
Responsibilities
Laboratory/Research/Testing facility – sponsorDuties codes: ["4"]; contact: RS-Advisor-Support@medpace.com
Name
Medpace Finland Oy
Responsibilities
Clinical operations/regulatory support – sponsorDuties codes: ["1","2","3","5"]; contact: RS-Advisor-Support@medpace.com
Name
PCI Pharma Services Germany GmbH
Responsibilities
Logistics/shipments – sponsorDuties codes: ["14"]; contact: shipments-BER@pci.com

Third parties

  • {"country":"United States","full_name":"Medidata Solutions Inc.","duties_or_roles":"sponsorDuties codes: [\"7\"]; contact: patientcloudsupport@mdsol.com","organisation_type":"Non-Pharmaceutical company"}
  • {"country":"United Kingdom","full_name":"Adelphi Values Limited","duties_or_roles":"sponsorDuties codes: [\"15\" (Optional Participant Qualitative Interview), \"7\"]; contact: info@adelphivalues.com","organisation_type":"Pharmaceutical company"}
  • {"country":"Belgium","full_name":"MEDPACE LABORATORIES","duties_or_roles":"sponsorDuties codes: [\"4\"]; contact: RS-Advisor-Support@medpace.com","organisation_type":"Laboratory/Research/Testing facility"}
  • {"country":"Germany","full_name":"PCI Pharma Services Germany GmbH","duties_or_roles":"sponsorDuties codes: [\"14\"]; contact: shipments-BER@pci.com","organisation_type":"Pharmaceutical company"}
  • {"country":"Switzerland","full_name":"United BioSource (Suisse) S.A.","duties_or_roles":"sponsorDuties codes: [\"8\"]; contact: pv@springworkstx.com","organisation_type":"Pharmaceutical company"}
  • {"country":"United States","full_name":"United Biosource LLC","duties_or_roles":"sponsorDuties codes: [\"8\"]; contact: pv@springworkstx.com","organisation_type":"Pharmaceutical company"}
  • {"country":"Finland","full_name":"Medpace Finland Oy","duties_or_roles":"sponsorDuties codes: [\"1\",\"2\",\"3\",\"5\"]; contact: RS-Advisor-Support@medpace.com","organisation_type":"Pharmaceutical company"}
  • {"country":"United States","full_name":"Veeva Systems Inc.","duties_or_roles":"sponsorDuties codes: [\"15\" (Trial Master File Management)]; contact: all_hq@veeva.com","organisation_type":"Non-Pharmaceutical company"}
  • {"country":"United States","full_name":"Greenphire LLC","duties_or_roles":"sponsorDuties codes: [\"15\" (Site Payment, Patient Travel Arrangements and Reimbursement)]; contact: support@greenphire.com","organisation_type":"Non-Pharmaceutical company"}
  • {"country":"United Kingdom","full_name":"Andersonbrecon (UK) Limited","duties_or_roles":"sponsorDuties codes: [\"14\"]; contact: Theresa.Twohig@pci.com","organisation_type":"Pharmaceutical company"}

Investigational products

Investigational Product Name
Nirogacestat
Active Substance
NIROGACESTAT HYDROBROMIDE
Modality
Small molecule
Routes Of Administration
Oral
Route
Oral
Authorisation Status
Authorised
Orphan Designation
Yes
Maximum Dose
300 mg
Investigational Product Name
Nirogacestat
Active Substance
NIROGACESTAT HYDROBROMIDE
Modality
Small molecule
Routes Of Administration
Oral
Route
Oral
Authorisation Status
Authorised
Orphan Designation
Yes
Maximum Dose
300 mg

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