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My 30‐year roadmap for pediatric myasthenia gravis in H ong K ong: Searching for international collaboration
Author(s) -
Wong Virginia ChunNei
Publication year - 2015
Publication title -
clinical and experimental neuroimmunology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.297
H-Index - 15
ISSN - 1759-1961
DOI - 10.1111/cen3.12157
Subject(s) - myasthenia gravis , medicine , thymectomy , family medicine , pediatrics , clinical trial , milestone , archaeology , history
Pediatric myasthenia gravis (P‐ MG ) is an autoimmune disease affecting the neuromuscular junction ( NMJ ), and is rare in children. The roadmap of the research carried out for P‐ MG in Hong Kong over the past 30 years was reviewed. Currently, there is a lack of epidemiological studies in comparing clinical data or the outcome for people of different ethnic origins. P‐ MG is more common in Asians, especially Chinese and Japanese. Because of the lack of comparison studies for P‐ MG worldwide, the author initiated collaboration with international colleagues in 2008, and set up “The International Paediatric Myasthenia Gravis Registry Focus Group ( FG )” in 2009. We then established an “International Pediatric Myasthenia Gravis Registry ( IPMGR )” to review the current knowledge of P‐ MG in children. We designed an e‐ MG questionnaire for “Myasthenia Syndromes in Children,” and launched through the website ( ICNAP aedia) of the International Child Neurology Association ( ICNA ) in 2009–2010. As of 2014, we had collected 121 replies from clinicians–researchers in 43 countries. In 2013, we started a Delphi process for obtaining a consensus for diagnosis, management and treatment of P‐ MG . Despite the lack of research funding support as a result of the rarity of P‐ MG , and the lack of innovative pharmaceutical research and development, we still stress that we set up a foundation as a small step towards consolidating international collaboration to carry out epidemiological studies, genetic studies and randomized controlled trials of all the current available treatments, especially steroids for ocular P‐ MG , and indications for thymectomy.