Literature DB >> 29408815

Virtual Networks for Exchanging Information and Biomaterials: Future Directions.

Mariam Kourime1, S Faisal Ahmed.   

Abstract

Clinical and research networks for rare conditions are increasingly common nowadays. Given the rarity of many such conditions, there is a need to cover more conditions, yet there is also a need to sustain and improve the quality and effectiveness of existing networks. This review will discuss the qualities that are required by a virtual network using some international clinical and research networks that are currently active in the field of rare endocrine conditions affecting sex and adrenal development as exemplars.
© 2018 S. Karger AG, Basel.

Keywords:  Rare conditions; Rare diseases; Reference networks; Registries

Mesh:

Substances:

Year:  2018        PMID: 29408815     DOI: 10.1159/000486872

Source DB:  PubMed          Journal:  Sex Dev        ISSN: 1661-5425            Impact factor:   1.824


  2 in total

1.  The current landscape of European registries for rare endocrine conditions.

Authors:  S R Ali; J Bryce; M Cools; M Korbonits; J G Beun; D Taruscio; T Danne; M Dattani; O M Dekkers; A Linglart; I Netchine; A Nordenstrom; A Patocs; L Persani; N Reisch; A Smyth; Z Sumnik; W E Visser; O Hiort; A M Pereira; S F Ahmed
Journal:  Eur J Endocrinol       Date:  2019-01-01       Impact factor: 6.664

Review 2.  The Role of International Databases in Understanding the Aetiology and Consequences of Differences/Disorders of Sex Development.

Authors:  Salma Rashid Ali; Angela Lucas-Herald; Jillian Bryce; Syed Faisal Ahmed
Journal:  Int J Mol Sci       Date:  2019-09-07       Impact factor: 5.923

  2 in total

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