Phenotypic and Genotypic Characterisation of a Large, Multicentre Italian Cohort of 46, XY DSD Patients

NCT ID: NCT06723938

Last Updated: 2024-12-09

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

Total Enrollment

520 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-06-15

Study Completion Date

2025-06-15

Brief Summary

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Observational exploratory study of a cohort of pediatric and adolescent patients diagnosed with DSD karyotype 46,XY, a rare congenital clinical condition characterized by a disharmonic development between chromosomal sex, gonadal sex and/or phenotypic sex.

Detailed Description

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Observational, retro-prospective, exploratory, multicentre study coordinate by the IRCCS Azienda Ospedaliero-Universitaria of Bologna, Italy.

The study consists of the collection and analysis of clinical, biochemical, instrumental and genetic data on pediatric and adolescent patients referred to partecipating centres in a given period with a diagnosis of 46,XY Disorders of Sex Development (DSD).

The primary aim of the study is to assess the number of 46,XY DSD patients referred to partecipating centres, describing the phenotypic, hormonal and genetic characterisation.

The secondary aims are to assess the correlation between molecular diagnosis and EMS/EGS score (External Masculinization Score ed ExternalGenital Score) and to evaluate the diagnostic rate over the reporting period.

Conditions

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46, XY DSD

Keywords

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46 XY DSD

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Eligibility Criteria

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Inclusion Criteria

* Karyotype 46,XY DSD;
* Genital ambiguity signs assessed on the basis of clinical phenotype and EMS/EGS for karyotype 46,XY DSD;
* Age \< 18 years at diagnosis of 46,XY DSD;
* Patients referred to the IRCCS Azienda Ospedaliero-Universitaria di Bologna since 01/01/1991 or to other participating centres since 01/01/2000;
* Obtaining informed consent from patients or from parents/legal guardian of pediatric patients.

Exclusion Criteria

• None.
Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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IRCCS Azienda Ospedaliero-Universitaria di Bologna

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Federico Baronio, MD

Role: PRINCIPAL_INVESTIGATOR

IRCCS Azienda Ospedaliero-Universitaria di Bologna

Locations

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IRCCS Azienda Ospedaliero-Universitaria di Bologna

Bologna, Bologna, Italy

Site Status RECRUITING

IRCCS Ospedale San Raffaele

Milan, Milano, Italy

Site Status NOT_YET_RECRUITING

Azienda Ospedaliero Universitaria Pisana

Pisa, Pisa, Italy

Site Status NOT_YET_RECRUITING

Ospedale Pediatrico Bambino Gesù

Roma, Roma, Italy

Site Status NOT_YET_RECRUITING

Countries

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Italy

Central Contacts

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Federico Baronio

Role: CONTACT

Phone: 00390512144816

Email: [email protected]

Facility Contacts

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Federico Baronio

Role: primary

Federico Baronio

Role: backup

Marianna Rita Stancampiano

Role: primary

Marianna Rita Stancampiano

Role: backup

Nina Tyutyusheva

Role: primary

Nina Tyutyusheva

Role: backup

Carla Bizzarri

Role: primary

Carla Bizzarri

Role: backup

Other Identifiers

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DSDPed

Identifier Type: -

Identifier Source: org_study_id