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Title: Clinical practice with steroid therapy for Duchenne muscular dystrophy: An expert survey in Asia and Oceania
Authors: Fumi Takeuchi
Harumasa Nakamura
Naohiro Yonemoto
Hirofumi Komaki
Raymond L. Rosales
Andrew J. Kornberg
Allan H. Bretag
Charungthai Dejthevaporn
Khean Jin Goh
Yuh Jyh Jong
Dae Seong Kim
Satish V. Khadilkar
Dingguo Shen
Kum Thong Wong
Josiah Chai
Sophelia Hoi Shan Chan
Sara Khan
Ohnmar Ohnmar
Ichizo Nishino
Shin'ichi Takeda
Ikuya Nonaka
Kyoto University School of Public Health
Kaohsiung Medical University Chung-Ho Memorial Hospital
University of Santo Tomas Hospital
The Aga Khan University Hospital
University of South Australia
University of Malaya
Royal Children's Hospital, Melbourne
National Neuroscience Institute of Singapore
National Institute of Neuroscience, Kodaira
National Center of Neurology and Psychiatry Kodaira
Faculty of Medicine, Ramathibodi Hospital, Mahidol University
National Chiao Tung University Taiwan
Bombay Hospital and Medical Research Centre
Fudan University
The University of Hong Kong
Pusan National University Yangsan Hospital
University of Medicine 1
Keywords: Medicine;Neuroscience
Issue Date: 1-Mar-2020
Citation: Brain and Development. Vol.42, No.3 (2020), 277-288
Abstract: © 2020 The Japanese Society of Child Neurology Background: Several studies on clinical practice for Duchenne muscular dystrophy (DMD) have been conducted in Western countries. However, there have been only a few similar studies in Asia and Oceania. Here, we investigate the steroid therapy-related clinical practice for DMD among the local experts. In 2015, we conducted a DMD expert survey in Asia and Oceania to acquire information regarding patients with DMD and to assess current clinical practice with the cooperation of Asian and Oceanian Myology Centre, a neuromuscular disease research network. Results: We obtained survey responses from 87 out of 148 clinicians (62%) from 13 countries and regions. In China, 1385 DMD patients were followed-up by 5 respondent neurologists, and 84% were between 0 and 9 years of age (15% were 10–19 years, 1% > 19 years). While in Japan, 1032 patients were followed-up by 20 clinicians, and the age distribution was similar between the 3 groups (27% were 0–9 years, 35% were 10–19 years, 38% were >19 years). Most respondent clinicians (91%) were aware of DMD standard of care recommendations. Daily prednisolone/prednisone administration was used most frequently at initiation (N = 45, 64%). Inconsistent opinion on steroid therapy after loss of ambulation and medication for bone protection was observed. Conclusions: Rare disease research infrastructures have been underdeveloped in many of Asian and Oceanian countries. In this situation, our results show the snapshots of current medical situation and clinical practice in DMD. For further epidemiological studies, expansion of DMD registries is necessary.
ISSN: 18727131
Appears in Collections:Scopus 2020

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