Clinical trial • Not applicable • Haematology|Rare Disease

EFANESOCTOCOG ALFA for Haemophilia A

Not applicable trial of EFANESOCTOCOG ALFA for Haemophilia A. open-label, none/not specified-controlled. 175 participants.

Overview

Trial Therapeutic Area
Haematology|Rare Disease
Trial Disease
Haemophilia A
Trial Stage
Not applicable
Drug Modality
Peptide/protein/enzyme
Paediatric Trial
Yes
Orphan Drug
Yes

Key dates

Initial CTIS Submission Date
20-12-2024
First CTIS Authorization Date
28-04-2025

Trial design

open-label, none/not specified-controlled Not applicable trial across 33 sites in Czechia, Germany, Ireland and others.

Open Label
Yes
Comparator
None/Not specified
Target Sample Size
175
Trial Duration For Participant
1095

Eligibility

Recruits 175 paediatric patients.

Vulnerable Population
The trial includes vulnerable populations (minors). Assent and age-specific information/consent materials are provided: assent forms for ages 6-11, 12-14, and 15-17 years and parental/legal representative informed consent forms. The protocol requires capability to give signed informed consent for adults; for minors parental/legal representative consent and age-appropriate assent documents are used (multiple ICF/assent templates exist).

Inclusion criteria

  • {"criterion_text":"- 1. Male or female patient with a diagnosis of haemophilia A."}
  • {"criterion_text":"- 2. Capable of giving signed informed consent, which includes compliance with the requirements and restrictions listed in the informed consent form (ICF) and in this protocol."}
  • {"criterion_text":"- 3. Prescribed with efanesoctocog alfa prophylactic treatment within 6 months prior to study enrolment or at the latest at the enrolment visit, in accordance with local regulations."}
  • {"criterion_text":"- 4. Must have received prophylactic treatment(s) with any haemophilia product(s) for at least 12 months prior to being prescribed with efanesoctocog alfa treatment."}
  • {"criterion_text":"- 5. Have documented pre-study treatment data on haemophilia prophylaxis prescriptions and on treated bleeding episodes from the 12-months prior to being prescribed efanesoctocog alfa treatment and until enrolment into this study."}
  • {"criterion_text":"- 6. Willing to adhere to the visit schedule and to undergo mandatory study assessment (HJHS, PROs)."}
  • {"criterion_text":"- 7. Willingness and the ability of the patient or their legally designated representative to document all bleeding episodes, including any treatments for those episodes."}
  • {"criterion_text":"- 8. For HEAD-US subgroup: Accept to undergo annual ultrasound assessment on the index joints (ankles, elbows, knees)."}

Exclusion criteria

  • {"criterion_text":"- 1. Acquired haemophilia A and other blood clotting disorders than hereditary haemophilia A"}
  • {"criterion_text":"- 2. Any positive FVIII inhibitor result (defined as inhibitor titre ≥0.6 Bethesda unit [BU]/mL) from the medical records in connection to the switch to efanesoctocog alfa until the enrolment visit."}
  • {"criterion_text":"- 3. Enrolment in a concurrent clinical interventional study, or intake of an investigational medicinal product (IMP), including for haemophilia prophylaxis, within 3 months prior to enrolment in this study."}
  • {"criterion_text":"- 4. Patient not suitable for participation, whatever the reason, as judged by the Investigator, e.g., patient is not able or willing to perform the study assessments"}

Endpoints

Primary endpoints

  • {"endpoint_text":"- Annualised joint bleeding rate (AjBR) over the prospective period","definition_or_measurement_approach":"Annualised joint bleeding rate (AjBR) measured over the prospective observation period (rate of joint bleeding events per year during prospective follow-up)."}

Secondary endpoints

  • {"endpoint_text":"- 1. Annual Bleeding Rate over the prospective observation period","definition_or_measurement_approach":"Annual bleeding rate calculated as the number of bleeding events per year during the prospective observation period."}
  • {"endpoint_text":"- 2. Number of injections and total dose to control a bleeding event over the prospective observation period","definition_or_measurement_approach":"Count of injections administered and the cumulative dose used to control each bleeding event during the prospective observation period (number and total IU/dose per event)."}
  • {"endpoint_text":"- 3. Change in HJHS from enrolment to Months 12, 24 and 36","definition_or_measurement_approach":"Change in Hemophilia Joint Health Score (HJHS) from baseline (enrolment) to months 12, 24 and 36, using the standard HJHS assessment."}
  • {"endpoint_text":"- 4. Target joint development, resolution, and recurrency on a patient and joint level during the period on efanesoctocog alfa","definition_or_measurement_approach":"Assessment of development, resolution and recurrence of target joints at both patient and joint level during treatment with efanesoctocog alfa (tracking target joint status over follow-up)."}

Recruitment

Planned Sample Size
175
Recruitment Window Months
42
Consent Approach
Adults provide written informed consent (ICF). Minors provide age-appropriate assent with parental/legal representative consent; specific assent/ICF documents exist for ages 6-11, 12-14, and 15-17, plus parental information/consent forms and pregnancy follow-up forms. Multiple language versions of participant information/assent/ICF are available (examples in file list include EN, DE, CZ, ES, FR, SV, HR, IT).

Geography

Total Number Of Sites
33
Total Number Of Participants
175

Czechia

Earliest CTIS Part Ii Submission Date
04-03-2025
Latest Decision Or Authorization Date
29-04-2025
Processing Time Days
56
Number Of Sites
3
Number Of Participants
18

Sites

Site Name
Fakultni Nemocnice V Motole
Department Name
Klinika dětské hematologie a onkologie
Contact Person Name
Ester Zápotocká
Contact Person Email
ester.zapotocka@fnmotol.cz
Site Name
Fakultni Nemocnice Brno
Department Name
Oddělení klinické hematologie
Contact Person Name
Petr Smejkal
Contact Person Email
smejkal.petr@fnbrno.cz
Site Name
Fakultni Nemocnice Ostrava
Department Name
Ambulance krevního centra
Contact Person Name
Radomíra Hrdličková
Contact Person Email
radomira.hrdlickova@fno.cz

Germany

Earliest CTIS Part Ii Submission Date
31-03-2025
Latest Decision Or Authorization Date
30-04-2025
Processing Time Days
30
Number Of Sites
5
Number Of Participants
35

Sites

Site Name
HZRM Haemophilie-Zentrum Rhein Main GmbH
Department Name
Director of Haemophilia Centre Rhein Main – HZRM, Frankfurt
Contact Person Name
Carmen Escuriola-Ettingshausen
Contact Person Email
Carmen.escuriola@hzrm.de
Site Name
Universitaetsklinikum Bonn AöR
Department Name
Director of Institute of Experimental Haematology and Transfusions Medicine
Contact Person Name
Johannes Oldenburg
Contact Person Email
johannes.oldenburg@ukbonn.de
Site Name
Klinikum der Universitaet Muenchen AöR
Department Name
Head of Paediatric Haemostaseology and Haemophilia Centre
Contact Person Name
Martin Olivieri
Site Name
Charite Universitaetsmedizin Berlin KöR
Department Name
Head Outpatient Clinics Pediatric Hematology and Oncology
Contact Person Name
Susanne Holzhauer
Contact Person Email
Susanne.Holzhauer@charite.de
Site Name
University Medical Center Hamburg-Eppendorf
Department Name
Head of the haemostaseology department
Contact Person Name
Florian Langer
Contact Person Email
langer@uke.de

Ireland

Earliest CTIS Part Ii Submission Date
26-03-2025
Latest Decision Or Authorization Date
02-05-2025
Processing Time Days
37
Number Of Sites
1
Number Of Participants
6

Sites

Site Name
Children's Health Ireland
Department Name
Haematology Department
Contact Person Name
Elizabeth Mary (Beatrice) Nolan
Contact Person Email
Beatrice.nolan@olchc.ie

Spain

Earliest CTIS Part Ii Submission Date
17-02-2025
Latest Decision Or Authorization Date
29-04-2025
Processing Time Days
71
Number Of Sites
7
Number Of Participants
35

Sites

Site Name
University Hospital Son Espases
Department Name
Hematology
Contact Person Name
Mariana Canaro Hirnyk
Contact Person Email
huse.comunicacio@ssib.es
Site Name
Hospital Universitario Miguel Servet
Department Name
Hematology
Contact Person Name
José Manuel Calvo Villas
Site Name
Complexo Hospitalario Universitario A Coruna
Department Name
Hematology
Contact Person Name
Marta Fernandez Docampo
Site Name
Hospital De La Santa Creu I Sant Pau
Department Name
Hematology
Contact Person Name
José Mateo Arranz
Contact Person Email
jmateo@santpau.cat
Site Name
Hospital Universitario De Salamanca
Department Name
Hematology
Contact Person Name
José Maria Bastida Bermejo
Site Name
Hospital Universitario Regional De Malaga
Department Name
Hematology
Contact Person Name
Francisco José Lopez Jaime
Contact Person Email
estudios.clinicos@ibima.eu
Site Name
Hospital Universitario De Salamanca (duplicate entry not expected but listed above)
Department Name
Hematology

Sweden

Earliest CTIS Part Ii Submission Date
31-03-2025
Latest Decision Or Authorization Date
29-04-2025
Processing Time Days
29
Number Of Sites
2
Number Of Participants
12

Sites

Site Name
Karolinska University Hospital
Department Name
Department of Hematology/Coagulation Unit
Contact Person Name
Maria Magnusson
Site Name
Sahlgrenska University Hospital-Vaestra Goetalandsregionen
Department Name
Department of Hematology and Coagulation Disorders
Contact Person Name
Anna Olsson
Contact Person Email
anna.el.olsson@vgregion.se

Croatia

Earliest CTIS Part Ii Submission Date
30-07-2025
Latest Decision Or Authorization Date
29-08-2025
Processing Time Days
30
Number Of Sites
1
Number Of Participants
5

Sites

Site Name
University Hospital Centre Zagreb
Department Name
Department of internal medicine
Contact Person Name
Ana Boban
Contact Person Email
ana.boban@kbc-zagreb.hr

France

Earliest CTIS Part Ii Submission Date
25-02-2025
Latest Decision Or Authorization Date
28-04-2025
Processing Time Days
62
Number Of Sites
7
Number Of Participants
35

Sites

Site Name
Centre Hospitalier Regional De Marseille
Department Name
Paediatric Haematology, Immunology and Oncology Department
Contact Person Name
Hervé Chambost
Contact Person Email
herve.chambost@ap-hm.fr
Site Name
Assistance Publique Hopitaux De Paris
Department Name
Adult Hematology Department, Necker-Enfants Malades Hospital
Contact Person Name
Laurent Frenzel
Contact Person Email
laurent.frenzel@aphp.fr
Site Name
Centre Hospitalier Universitaire De Nantes
Department Name
Site Hôtel Dieu, Haemostasis Center
Contact Person Name
Nicolas Drillaud
Contact Person Email
nicolas.drillaud@chu-nantes.fr
Site Name
Centre Hospitalier Universitaire De Bordeaux
Department Name
Site Tripode, Bordeaux skills and resources center for constitutional hemorrhagic disorders
Contact Person Name
Sabine-Marie Castet
Site Name
Centre Hospitalier Universitaire De Rennes
Department Name
Site Pontchaillou, Treatment Centre for Haemorrhagic Diseases
Contact Person Name
Sophie Bayart
Contact Person Email
sophie.bayart@chu-rennes.fr
Site Name
Centre Hospitalier Universitaire De Montpellier
Department Name
Arnaud de Villeneuve Hospital, Biological Hematology Department
Contact Person Name
Christine Biron-Andreani
Contact Person Email
c-biron@chu-montpellier.fr
Site Name
CHU de Rouen - Hôpital Charles Nicolle
Department Name
Haemophilia Centre
Contact Person Name
Virginie Barbay
Contact Person Email
virginie.barbay@chu-rouen.fr

Italy

Earliest CTIS Part Ii Submission Date
05-05-2025
Latest Decision Or Authorization Date
02-07-2025
Processing Time Days
58
Number Of Sites
7
Number Of Participants
29

Sites

Site Name
Azienda Ospedaliera Universitaria Citta Della Salute E Della Scienza Di Torino
Department Name
Department of Diagnostics SSD Maternal, Infant and Traumatology Transfusion Medicine
Contact Person Name
Berardino Pollio
Contact Person Email
bpollio@cittadellasalute.to.it
Site Name
Azienda Ospedaliera di Padova
Department Name
Medical Clinic II, Hemophilia Center
Contact Person Name
Ezio Zanon
Contact Person Email
ezio.zanon@unipd.it
Site Name
Azienda Ospedaliera Universitaria Citta Della Salute E Della Scienza Di Torino (second site listing)
Department Name
Homeostasis and Thrombosis Center/Haematology Unit
Contact Person Name
Alessandra Borchiellini
Site Name
Azienda Ospedaliero-Universitaria Policlinico G. Rodolico-San Marco Di Catania
Department Name
Hematology Unit with BMT
Contact Person Name
Gaetano Giuffrida
Contact Person Email
gaegiuffrida@gmail.com
Site Name
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Department Name
Centre for Haemorrhagic and Thrombotic Diseases
Contact Person Name
Raimondo De Cristofaro
Site Name
Azienda Ospedaliera Universitaria San Giovanni Di Dio E Ruggi d'Aragona
Department Name
Center for Congenital Hemorrhagic Diseases and Thrombotic Diseases
Contact Person Name
Anna Guida
Site Name
Azienda Ospedaliero-Universitaria Di Bologna IRCCS Istituto Di Ricerca E Di Cura A Carattere Scientifico
Department Name
SSD Congenital Hemorragic Diseases
Contact Person Name
Leila Valdrè
Contact Person Email
LELIA.VALDRE@AOSP.80.IT

Sponsor

Primary sponsor

Full Name
Swedish Orphan Biovitrum AB (publ)
Organisation Type
Pharmaceutical company
Country Of Registered Address
Sweden

Contract research organisations

Name
Psi Cro AG
Responsibilities
[1,11,12,2,5,6,8,9]

Third parties

  • {"country":"Switzerland","full_name":"Psi Cro AG","duties_or_roles":"[1,11,12,2,5,6,8,9]","organisation_type":"Pharmaceutical company"}
  • {"country":"United States","full_name":"Veeva Systems Inc.","duties_or_roles":"[{\"code\":\"15\",\"value\":\"eTMF\"},{\"code\":\"7\"}]","organisation_type":"Non-Pharmaceutical company"}

Investigational products

Investigational Product Name
ALTUVOCT 4 000 IU powder and solvent for solution for injection
Active Substance
EFANESOCTOCOG ALFA
Modality
Peptide/protein/enzyme
Routes Of Administration
INTRAVENOUS INJECTION
Route
INTRAVENOUS INJECTION
Authorisation Status
Marketing authorisation (MA number EU/1/24/1824/007) indicated
Orphan Designation
Yes
Investigational Product Name
ALTUVOCT 2 000 IU powder and solvent for solution for injection
Active Substance
EFANESOCTOCOG ALFA
Modality
Peptide/protein/enzyme
Routes Of Administration
INTRAVENOUS INJECTION
Route
INTRAVENOUS INJECTION
Authorisation Status
Marketing authorisation (MA number EU/1/24/1824/005) indicated
Orphan Designation
Yes
Investigational Product Name
ALTUVOCT 500 IU powder and solvent for solution for injection
Active Substance
EFANESOCTOCOG ALFA
Modality
Peptide/protein/enzyme
Routes Of Administration
INTRAVENOUS INJECTION
Route
INTRAVENOUS INJECTION
Authorisation Status
Marketing authorisation (MA number EU/1/24/1824/002) indicated
Orphan Designation
Yes
Investigational Product Name
ALTUVOCT 1 000 IU powder and solvent for solution for injection
Active Substance
EFANESOCTOCOG ALFA
Modality
Peptide/protein/enzyme
Routes Of Administration
INTRAVENOUS INJECTION
Route
INTRAVENOUS INJECTION
Authorisation Status
Marketing authorisation (MA number EU/1/24/1824/004) indicated
Orphan Designation
Yes
Investigational Product Name
ALTUVOCT 3 000 IU powder and solvent for solution for injection
Active Substance
EFANESOCTOCOG ALFA
Modality
Peptide/protein/enzyme
Routes Of Administration
INTRAVENOUS INJECTION
Route
INTRAVENOUS INJECTION
Authorisation Status
Marketing authorisation (MA number EU/1/24/1824/006) indicated
Orphan Designation
Yes
Investigational Product Name
ALTUVOCT 250 IU powder and solvent for solution for injection
Active Substance
EFANESOCTOCOG ALFA
Modality
Peptide/protein/enzyme
Routes Of Administration
INTRAVENOUS INJECTION
Route
INTRAVENOUS INJECTION
Authorisation Status
Marketing authorisation (MA number EU/1/24/1824/001) indicated
Orphan Designation
Yes

Related trials

Other published trials that may interest you.