Sex Development & Maturation

Existing networks or registries and biobanks



  • GnRH Cost action (end: April 2016) > European GnRH network

    An international consortium of physicians and scientists studying hypogonadotropic hypogonadism, which is characterised by delayed or absent puberty, and infertility. We are building a collaborative network that is actively seeking to involve patients, in order to translate scientific discoveries into improved patient care.

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    • Network Ipoganodismo Centrale

The Italian Network on Hypo-Hypo of the Italian Societies of Adult and Pediatric Endocrinology (SIE and SIEDP and SIAMS) with clinical database containing information of 590 patients and the associated bio-bank.


  • EuroDSD

    The EuroDSD project was funded by EU FP7 from 2008 to 2011. The consortium was investigating Disorders of Sex Development (DSD) to result in a systematic and reliable discovery of DSD-relevant biochemical, genetic and functional profiles. This aims at the detection of new diagnostic markers, both in steroidogenesis as well as in genetics and it will provide the basis for explaining the natural course of these disorders.

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  • DSDLife

    The project stands for sustainable improvement of clinical care for patients with disorders of sex development (DSD). Areas that are of high importance for life quality will be studied: general quality of life and psychological well-being, psychosexual development, quality of treatment and satisfaction on treatment , and metabolism. In particular the project aims to focus on patients’ views, ethics and cultural context.

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  • DSD Cost action (to end April 2018)

    This COST Action will link leading international scientists, clinicians, and stakeholders in the field to characterise DSD with the aim of a diagnosis to all people with DSD with structured, potentially personalised, management and therapies. The Action will aid to the understanding of the clinical heterogeneity as well as reveal the pathophysiological commonalities between different forms of DSD at the molecular level.

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  • Registry I-DSD

    I-DSD is a registry of people born with rare medical conditions that affect their sex development as well as a registry of health care professionals and scientists with an interest in this field of medicine.

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  • Registry I-CAH

    The International-CAH (I-CAH) network is an initiative to improve the clinical management of the rare disease Congenital Adrenal Hyperplasia. With a newly-created I-CAH Registry as its centrepiece, the initiative also focuses on providing information to patients and clinicians and developing research to optimise healthcare. The I-CAH Registry delivers a means of connecting clinical and research centres from around the world within a Virtual Research Environment (VRE) and will underpin research into new management strategies and therapies.

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  • Milan consortium on 46,XX Ovarian Dysgenesis

    Database and biobank of 87 patients



    The European Network for the Investigation of Gender Incongruence (ENIGI) is a multidisciplinary, multicentre prospective study that started in 2010. Five European treatment centres, Ghent, Hamburg, Oslo, Florence, and Amsterdam, developed a common study and treatment protocol.



Information video for patients and healthcare professionals

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