Long-Term Interventional Follow-Up Study Up to 4 Years of Age of Children with Prader-Willi Syndrome Included in the OTBB3 Clinical Trial and Comparison with an Untreated Cohort of Children with Prader-Willi Syndrome (OTBB3 Follow-Up)

2024-517925-25-00 Protocol RC31/20/0421 Therapeutic exploratory (Phase II) Ended

End 29 Apr 2025 · Status Ended · 1 EU/EEA countries · 11 sites · Protocol RC31/20/0421

Overview

Sponsor-declared trial summary

Phase Therapeutic exploratory (Phase II)
Status Ended
Participants planned 65
Countries 1
Sites 11

prader-willi syndrome

The primary objective of this study will be to confirm the long-term safety profile, including the associated main comorbidities, in all children with PWS who have been treated in the OTBB3 study.

Key facts

Sponsor
Centre Hospitalier Universitaire De Toulouse
Participant type
Pediatric, Patients
Age range
0-17 years
Gender
Male and Female
Therapeutic area
Diseases [C] - Nutritional and Metabolic Diseases [C18]
Trial duration
completed 29 Apr 2025
Decision date (initial)
2024-12-17
Transition trial
Yes
Low-intervention
No
Rare-disease indication
Yes
Vulnerable population
Yes
Funding sources
OT4B start-up

External identifiers

EU CT number
2024-517925-25-00
EudraCT number
2020-006161-11
ClinicalTrials.gov
NCT05032326

Trial design

CTIS Part I — objectives, methods, condition coding

Main objective

Scope: Safety, Efficacy

The primary objective of this study will be to confirm the long-term safety profile, including the associated main comorbidities, in all children with PWS who have been treated in the OTBB3 study.

Conditions and MedDRA coding

prader-willi syndrome

Eligibility criteria

Principal inclusion / exclusion criteria as submitted by sponsor

Inclusion criteria 3

  1. 1. Male or female child with a genetically confirmed diagnosis of PWS ; 2. The parents (or legal representative) must have signed the consent form; 3. Treated cohort: the child participated in the OTBB3 study and is aged 16±4 months at inclusion. Inclusion visit will be performed considering the next routine consultation. 4. Untreated cohort: the child has never received OT, is aged 30±6 months at inclusion (in order to maximise the number of children in the untreated cohort) and is followed in France. Inclusion visit will be performed considering the next routine consultation.
  2. 2. The parents (or legal representative) must have signed the consent form;
  3. 3. Treated cohort: the child participated in the OTBB3 study and is aged 16±4 months at inclusion. Inclusion visit will be performed considering the next routine consultation.

Exclusion criteria 2

  1. 1. Administrative problems: a. Inability for the parents (or legal representative) to understand/fulfil study requirements; b. No coverage by a social security regime;
  2. 2. Refusal of parents (or legal representative) to sign the consent form;

Endpoints

Primary and secondary outcome measures (English text)

Primary endpoints 3

  1. The number and percentage of patients with adverse events (AEs) and serious adverse events (SAEs);
  2. The occurrence of the main comorbidities
  3. The occurrence of medications, surgery and rehabilitations by collecting type, age at start and stop, dosing or frequency.

Investigational products

Investigational medicinal products (IMPs), comparators, placebo, auxiliary

Test 1

Otwillo 44.44 IU/mL, nasal spray solution

PRD11709894 · Product

Active substance
Oxytocin
Substance synonyms
GR121619
Pharmaceutical form
NASAL SPRAY, SOLUTION
Route of administration
INTRANASAL USE
Max daily dose
4 U unit(s)
Max total dose
4 U unit(s)
Max treatment duration
8 Week(s)
Authorisation status
Not Authorised
MA holder
OT4B
Paediatric formulation
No
Orphan designation
No

Sponsors and contacts

Sponsor organisations, regulatory contacts, third parties

Centre Hospitalier Universitaire De Toulouse

Sponsor organisation
Centre Hospitalier Universitaire De Toulouse
Address
2 Rue Viguerie
City
Toulouse
Postcode
31300
Country
France

Scientific contact point

Organisation
Centre Hospitalier Universitaire De Toulouse
Contact name
TAUBER

Public contact point

Organisation
Centre Hospitalier Universitaire De Toulouse
Contact name
Nadege ALGANS

Locations

1 EU/EEA country · 11 investigational sites

By country

CountryMS statusPlanned subjectsSites
France Ended 65 11
Rest of world 0

Investigational sites

France

11 sites · Ended
Centre Hospitalier Universitaire De Rennes
Pediatrie, 16 Boulevard De Bulgarie, Bp 90349, Rennes
Centre Hospitalier Universitaire De Dijon
Pediatrie, 10 Boulevard Mal De Lattre De Tassigny, 21000, Dijon
Centre Hospitalier Universitaire De Nice
Pediatrie, 4 Avenue Reine Victoria, 06000, Nice
Centre Hospitalier Universitaire De Nantes
Pediatrie, 7 Quai Moncousu, 44000, Nantes
Centre Hospitalier Universitaire Rouen
Pediatrie, 1 Rue De Germont, 76000, Rouen
Hospices Civils De Lyon
Mere-enfant, 59 Boulevard Pinel, 69500, Bron
Centre Hospitalier Regional De Marseille
Pediatrie, 264 Rue Saint Pierre, 13005, Marseille
Centre Hospitalier Universitaire De Lille
Pediatrie, Avenue Eugene Avinee, 59037, Lille Cedex
Centre Hospitalier Universitaire De Toulouse
Endocrinologie pediatrique, 330 Avenue De Grande Bretagne, 31059, Toulouse Cedex 9
Assistance Publique Hopitaux De Paris
Endocrinologie pediatrique, 149 Rue De Sevres, 75015, Paris
Centre Hospitalier Universitaire Grenoble Alpes
Pediatrie, Pavillon E, Centre Hospitalier Universitaire Grenoble Alpes, Grenoble Cedex 09

Results and documents

Annex IV summary of results, Annex V layperson summary, and all documents registered in CTIS for this trial

Documents 5 files

Public protocol annexes, IB summaries, regulatory submissions and post-authorisation documents registered in CTIS.

TypeTitleVersion
Protocol (for publication) OTBB3 FU PROTOCOL 6
Recruitment arrangements (for publication) Liste investigateurs 5
Subject information and informed consent form (for publication) Consent treated cohort 5
Subject information and informed consent form (for publication) Consent untreated cohort 6
Synopsis of the protocol (for publication) OTBB3 FU RESUME 4

Application history

1 submissions — initial application plus substantial / non-substantial modifications

#TypeCodeSubmittedReference MSConclusionDecision date
1 INITIAL IN 2024-11-04 France Acceptable
2024-12-03
2024-12-17