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A word on Nomenclature
Please CLICK HERE for a document outlining considerations for use of terminology.
Professional Societies:
- Urological Society of Australia and New Zealand.
- RANZCOG
- International Classification of Pediatric Endocrine Diagnoses (ICPED) – a comprehensive diagnostic list for endocrine diagnoses (APEG associated worldwide collaboration). Scroll down page to individual chapters on each diagnostic group.
Support Groups:
- CAH Support Group (Australia)
- IPSA (Intersex Peer Support Australia Previously AISSG – Androgen Insensitivity Syndrome Support Group (Australia)
- CAH Living as Neighbours (CLAN)
- MAGIC Foundation (USA) – Growth support group with CAH section
- CAH Support Group (USA)
- Climb Congenital Adrenal Hyperplasia UK Support Group
- AIS/DSD Support Group (USA)
- Accord Alliance
- IHRA Intersex Human Rights Australia (previously OII Australia)
- Turner Syndrome Association of Australia
- CARES Foundation
- Hormone Health Network (USA)
- Australian X & Y Spectrum Support (XXY, Klinefelters)
- BEECHAC group (bladder exstrophy and hypospadias etc)
- Daisy Network (premature ovarian insufficiency)
- MRKH Australia (Previously Sisters for Love MRKH Foundation)
General DSD Resources for Families and Health Professionals:
- DSDfamilies
- DSDteens
- DSD Genetics
- Health of people with intersex variations – Victorian Department of Health Resource (March 2019)
- DSD Guideline: New Zealand, Starship Hospital (October 2020)
Other resources and links:
- Hormones and Me Booklet Series. CLICK HERE to find the books listed below
- Congenital Adrenal Hyperplasia (CAH)
- Management of Emergency or Stress Situations
- EndocrineWeb.com Adrenal Resources
- Hydrocortisone Injection Instruction Leaflet
- CONGENITAL ADRENAL HYPERPLASIA: A Parents’ Guide (Paperback) by C. Y. Hsu (Author), Scott A. Rivkees (Author) 2005;(ISBN10 1420806491; ISBN13 9781420806496)
- RCH Department of Gynaecology
- Living with Androgen Insensitivity Syndrome (UK)
- VIC Gov Neonatal Handbook – hypospadias
- Children’s Hospital Colorado: X&Y chromosome variations
- TSSG UK (Turners Syndrome Support Society)
- Consensus Statement: Global Disorders of Sex Development. Update since 2006: Perceptions,Approach and Care (Hormone Research in Paediatrics Jan 2016)
Tests:
- CAH Gene tests (Mater Pathology)
- CAH Blood Spot testing for 17OHP (Mater Pathology)
- Androgen Insensitivity gene test (Androgen Receptor)
- Genetic testing for DSD without known cause is available on a research basis at the Murdoch Children’s Research Institute Molecular Development Group in Melbourne.
- Patients who are eligible include those with:
- 46 XY karyotype and female phenotype or under-virilisation including perineal hypospadias
- 46 XX karyotype with testes
- 46 XY karyotype and testicular regression syndrome (anorchia)
- Ovotesticular DSD
- Additional DSD patients including those with MRKH/Mullerian agenesis, POIExclusion criteria are patients with known causes of DSD, such as sex chromosome aneuploidy (Turner, Klinefelter), confirmed androgen insensitivity, enzyme deficiency or congenital adrenal hyperplasia.Please email andrew.sinclair@mcri.edu.au for more information and to obtain consent forms.
- Patients who are eligible include those with:
Last comprehensive update completed on 25 May 2018.