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Amyotrophic lateral sclerosis and parkinsonism in Papua, Indonesia: 2001–2012 survey results
  1. Kiyohito Okumiya1,2,
  2. Taizo Wada2,
  3. Michiko Fujisawa2,
  4. Masayuki Ishine3,
  5. Eva Garcia del Saz4,
  6. Yutaka Hirata5,
  7. Shigeki Kuzuhara6,
  8. Yasumasa Kokubo7,
  9. Harumichi Seguchi8,
  10. Ryota Sakamoto9,
  11. Indrajaya Manuaba10,
  12. Paulina Watofa11,
  13. Andreas L Rantetampang12,
  14. Kozo Matsubayashi2
  1. 1Research Institute for Humanity and Nature, Kyoto, Japan
  2. 2Center for Southeast Asian Studies, Kyoto University, Kyoto, Japan
  3. 3Yasugi Clinic, Shimane, Japan
  4. 4Center for Regional & International Collaboration, Kochi University, Kochi, Japan
  5. 5Kitaakita Municipal Hospital, Akita, Japan
  6. 6Faculty of Health Science, Suzuka University of Medical Science, Mie, Japan
  7. 7Graduate School of Regional Innovation Studies, Mie University, Mie, Japan
  8. 8Faculty of Medicine, Kochi University, Kochi, Japan
  9. 9Hakubi Center for Advanced Research, Kyoto University, Kyoto, Japan
  10. 10Wamena Public Hospital, Papua, Indonesia
  11. 11Faculty of Medicine, Cenderawasih University, Papua, Indonesia
  12. 12Faculty of Public Health, Cenderawasih University, Papua, Indonesia
  1. Correspondence to Dr Kiyohito Okumiya; okumiyak{at}


Objective Only one previous follow-up study of amyotrophic lateral sclerosis (ALS) and parkinsonism in Papua, Indonesia has been carried out since a survey undertaken in 1962–1981 by Gajdusek and colleagues. Therefore, to clarify the clinical epidemiology of ALS and parkinsonism in the southern coastal region of Papua, the clinical characteristics and prevalence of the diseases in this region were examined and assessed.

Methods Cases of ALS and parkinsonism were clinically examined during a 2001–2012 survey in Bade and other villages along the Ia, Edera, Dumut and Obaa rivers in Papua, Indonesia. Possible, probable and definite ALS was diagnosed clinically by certified neurologists based on El Escorial criteria. The criteria for a diagnosis of parkinsonism were the presence of at least two of the four following signs: tremor, rigidity, bradykinesia and postural impairment with a progressive course.

Results During the survey, 46 cases of ALS and/or parkinsonism were diagnosed within a population range of 7000 (2001–2002) to 13 900 (2007–2012). The 46 cases consisted of 17 probable-definite cases of ALS, including three with cognitive impairment (CI), 13 cases of overlapping possible, probable or definite ALS and parkinsonism, including five with CI, and 16 cases of parkinsonism, including one with CI. The crude point prevalence rate of pure ALS was estimated to be at least 73 (95% CI 0 to 156) to 133 (27 to 240)/100 000 people and that of overlapping ALS and parkinsonism at least 53 (0 to 126) to 98 (2 to 193)/100 000 in 2007, or 2010 in some regions.

Conclusions While the prevalence of ALS in Papua has decreased over the past ∼30–35 years, it remains higher than the global average. There was a high prevalence of overlapping ALS, parkinsonism and CI, which has also been previously reported in Guam and Kii.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 3.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See:

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