Virtual Networks for Exchanging Information and Biomaterials: Future Directions

被引：2

作者：

Kourime, Mariam ^{[1
]}

Ahmed, S. Faisal ^{[1
]}

机构：

[1] Univ Glasgow, Sch Med Dent & Nursing, Off Rare Condit, Zone 1,Off Block,RHC & QEUH Campus,1345 Govan Rd, Glasgow G51 4TF, Lanark, Scotland

来源：

SEXUAL DEVELOPMENT | 2018年 / 12卷 / 1-3期

基金：

英国医学研究理事会;

关键词：

Rare conditions; Rare diseases; Reference networks; Registries; SEX DEVELOPMENT; DISORDERS; CARE;

D O I：

10.1159/000486872

中图分类号：

Q [生物科学];

学科分类号：

090105 [作物生产系统与生态工程];

摘要：

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. (C) 2018 S. Karger AG, Basel

引用

页码：140 / 144

页数：5

共 13 条

[1]

Ahmed SF, 2014, ENDOCR DEV, V27, P284, DOI 10.1159/000363676

[2]

Society for Endocrinology UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development (Revised 2015) [J].

Ahmed, S. Faisal ;

Achermann, John C. ;

Arlt, Wiebke ;

Balen, Adam ;

Conway, Gerry ;

Edwards, Zoe ;

Elford, Sue ;

Hughes, Ieuan A. ;

Izatt, Louise ;

Krone, Nils ;

Miles, Harriet ;

O'Toole, Stuart ;

Perry, Les ;

Sanders, Caroline ;

Simmonds, Margaret ;

Watt, Andrew ;

Willis, Debbie .

CLINICAL ENDOCRINOLOGY, 2016, 84 (05) :771-788

[3]

Response to the Council of Europe Human Rights Commissioner's Issue Paper on Human Rights and Intersex People [J].

Cools, Martine ;

Simmonds, Margaret ;

Elford, Sue ;

Gorter, Joke ;

Ahmed, S. Faisal ;

D'Alberton, Franco ;

Springer, Alex ;

Hiort, Olaf .

EUROPEAN UROLOGY, 2016, 70 (03) :407-409

[4]

Identification of an AR Mutation-Negative Class of Androgen Insensitivity by Determining Endogenous AR Activity [J].

Hornig, N. C. ;

Ukat, M. ;

Schweikert, H. U. ;

Hiort, O. ;

Werner, R. ;

Drop, S. L. S. ;

Cools, M. ;

Hughes, I. A. ;

Audi, L. ;

Ahmed, S. F. ;

Demiri, J. ;

Rodens, P. ;

Worch, L. ;

Wehner, G. ;

Kulle, A. E. ;

Dunstheimer, D. ;

Mueller-Rossberg, E. ;

Reinehr, T. ;

Hadidi, A. T. ;

Eckstein, A. K. ;

van der Horst, C. ;

Seif, C. ;

Siebert, R. ;

Ammerpohl, O. ;

Holterhus, P. -M. .

JOURNAL OF CLINICAL ENDOCRINOLOGY & METABOLISM, 2016, 101 (11) :4468-4477

[5]

Hughes IA, 2006, ARCH DIS CHILD, V91, P554, DOI [10.1136/adc.2006.098319, 10.1016/j.jpurol.2006.03.004]

[6]

Changes Over Time in Sex Assignment for Disorders of Sex Development [J].

Kolesinska, Zofia ;

Ahmed, S. Faisal ;

Niedziela, Marek ;

Bryce, Jillian ;

Molinska-Glura, Marta ;

Rodie, Martina ;

Jiang, Jipu ;

Sinnott, Richard O. ;

Hughes, Ieuan A. ;

Darendeliler, Feyza ;

Hiort, Olaf ;

van der Zwan, Yvonne ;

Cools, Martine ;

Guran, Tulay ;

Holterhus, Paul-Martin ;

Bertelloni, Silvano ;

Lisa, Lidka ;

Arlt, Wiebke ;

Krone, Nils ;

Ellaithi, Mona ;

Balsamo, Antonio ;

Mazen, Inas ;

Nordenstrom, Anna ;

Lachlan, Katherine ;

Alkhawari, Mona ;

Chatelain, Pierre ;

Weintrob, Naomi .

PEDIATRICS, 2014, 134 (03) :E710-E715

[7]

An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development [J].

Kourime, M. ;

Bryce, J. ;

Jiang, J. ;

Nixon, R. ;

Rodie, M. ;

Ahmed, S. F. .

ORPHANET JOURNAL OF RARE DISEASES, 2017, 12

[8]

Kourime M, 2016, NEW INT REGISTRY HIG

[9]

Current models of care for disorders of sex development - results from an International survey of specialist centres [J].

Kyriakou, Andreas ;

Dessens, Arianne ;

Bryce, Jillian ;

Iotova, Violeta ;

Juul, Anders ;

Krawczynski, Maciej ;

Nordenskjold, Agneta ;

Rozas, Marta ;

Sanders, Caroline ;

Hiort, Olaf ;

Ahmed, S. Faisal .

ORPHANET JOURNAL OF RARE DISEASES, 2016, 11 :1-10

[10]

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care [J].

Lee, Peter A. ;

Nordenstrom, Anna ;

Houk, Christopher P. ;

Ahmed, S. Faisal ;

Auchus, Richard ;

Baratz, Arlene ;

Dalke, Katharine Baratz ;

Liao, Lih-Mei ;

Lin-Su, Karen ;

Looijenga, Leendert H. J., III ;

Mazur, Tom ;

Meyer-Bahlburg, Heino F. L. ;

Mouriquand, Pierre ;

Quigley, Charmian A. ;

Sandberg, David E. ;

Vilain, Eric ;

Witchel, Selma .

HORMONE RESEARCH IN PAEDIATRICS, 2016, 85 (03) :158-180

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