Long-term Interventional Follow-up Study of Children With Prader-Willi Syndrome Included in the OTBB3 Clinical Trial

NCT ID: NCT05032326

Last Updated: 2024-04-30

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

RECRUITING

Clinical Phase

PHASE3

Total Enrollment

80 participants

Study Classification

INTERVENTIONAL

Study Start Date

2021-09-07

Study Completion Date

2025-04-01

Brief Summary

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This study is a prospective, multicentre, interventional cohort study in children with Prader-Willi Syndrome (PWS) over 4 years (no treatment administered). The duration of the preceding OTTB3 study is 26 weeks. An untreated cohort of children with PWS will be included at an age of 2 years and followed up until an age of 4 years.

Regarding the untreated cohort, children with PWS born in France and too old to be recruited in OTBB3 trial, principally those who were born within one year before the start of OTBB3 trial, will be offered to participate in this study. Infants born later who couldn't be included in OTBB3 study will be also offered to participate.

Detailed Description

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Conditions

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Prader-Willi Syndrome

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

OTHER

Blinding Strategy

NONE

Study Groups

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OXYTOCIN (OT) Treated cohort

babies treated with Oxytocin during the OTBB3 study

Group Type OTHER

Follow-up study of the treated cohort

Intervention Type DRUG

follow-up study of the patients in the treated cohort: that have been included in the otbb3 study

Untreated cohort

babies not included in the OTBB3 study and therefore never treated with Oxytocin

Group Type OTHER

Follow-up study of the untreated cohort

Intervention Type OTHER

follow-up study of the patients in the untreated cohort: that have NOT been included in the otbb3 study

Interventions

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Follow-up study of the treated cohort

follow-up study of the patients in the treated cohort: that have been included in the otbb3 study

Intervention Type DRUG

Follow-up study of the untreated cohort

follow-up study of the patients in the untreated cohort: that have NOT been included in the otbb3 study

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

1. Male or female child with a genetically confirmed diagnosis of PWS (patients can be enrolled if the genetic subtype is not available at inclusion, but the genetic subtype needs to be confirmed during the study);
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,
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.

Exclusion Criteria

1. Administrative problems:

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

12 Months

Maximum Eligible Age

36 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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University Hospital, Toulouse

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Maithé TAUBER, MD

Role: PRINCIPAL_INVESTIGATOR

University Hospital, Toulouse

Locations

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Hôpital Femme Mère Enfant

Bron, , France

Site Status RECRUITING

CHU Dijon Hôpital des Enfants

Dijon, , France

Site Status RECRUITING

CHU de Grenoble

Grenoble, , France

Site Status RECRUITING

Hôpital Jeanne de Flandre

Lille, , France

Site Status RECRUITING

Hôpital de la Timone Enfant

Marseille, , France

Site Status RECRUITING

CHU Nancy

Nancy, , France

Site Status RECRUITING

CHU Nantes

Nantes, , France

Site Status RECRUITING

Hôpital CHU-Lenval

Nice, , France

Site Status RECRUITING

Groupe Hospitalier Necker - Enfants Malades

Paris, , France

Site Status RECRUITING

CHU Rennes

Rennes, , France

Site Status RECRUITING

CHU Rouen

Rouen, , France

Site Status RECRUITING

Centre de réfrence Prader-Willi, Hospital of infants

Toulouse, , France

Site Status RECRUITING

Countries

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France

Central Contacts

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Maithé TAUBER, MD

Role: CONTACT

534 55 85 51 ext. +33

Julie CORTADELLAS

Role: CONTACT

534 55 85 51 ext. +33

Facility Contacts

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Marc Nicolino, MD

Role: primary

Marie Bournez, MD

Role: primary

Anne Spiteri, MD

Role: primary

Iva Gueorguieva, MD

Role: primary

Rachel Reynaud, MD

Role: primary

Carole Legagneur, MD

Role: primary

Sabine Baron, MD

Role: primary

Elsa Haine, MD

Role: primary

Graziella Pinto, MD

Role: primary

Marie-Béatrice Saade

Role: primary

Mireille Castanet, MD

Role: primary

Catherine MOLINAS

Role: primary

053458698 ext. +33

Other Identifiers

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RC31/20/0421

Identifier Type: -

Identifier Source: org_study_id

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