Meetings

YEAR Meetings Key Highlights Type of Meeting
2014 Asia-Pacific ALS Consortium – Inaugural meeting in Brussels, Belgium (Dec 2014)
> In conjunction with the Int Symposium on ALS/MND		 Chaired by Prof Matthew Kiernan, Carol Birks (Chair of Int Alliance of ALS/MND Assoc.)
> Decided to announce initiative in the Taiwan ALS/MND Meeting in April 2015		 Inaugural meet
2015 2nd meeting in Orlando, Florida (Dec 2015)
> In conjunction with the Int Symposium on ALS/MND		 Led by Prof Matthew Kiernan, Prof Gen Sobue, Carol Birks, Kiki Qu (Taiwan MND Assoc)
> National Registry Knowledge sharing: from China, Korea, Australia, Taiwan
> Members – Malaysia, China, India, Australia, Japan, Taiwan, Singapore, South Korea, New Zealand, Canada
> Voted for name – PACTALS – Pan Asian Consortium for Treatment and Research in ALS		 Satellite meet
2016 3rd meeting in Kuala Lumpur, Malaysia (Aug 2016)
> In conjunction with Asia Oceania Congress of Neurology		 > Website go-live: pactals.org, welcome member registrations
> New members: Indonesia, Philippines, Myanmar
> Prof Paul Talman (Australian MND Registry),

> Prof Gen Sobue (Japan Consortium for ALS, JaCALS)
> New members – status of national registry

 Satellite meet
2016 4th meeting in Dublin, Ireland (Dec 2016)
> in conjunction with Int Symp on ALS/MND		 > Discussion by PACTALS Steering Committee – managing patient registry, ethics requirements
> Prof Fan DS (China – Natural history study),

> Prof Kim SH (South Korea – de-novo mutations in PACTALS cohort)
> Dr Naoki A (JaCALS)

 Satellite meet
2017 5th meeting in Kyoto, Japan (Sept 2017)
> in conjunction with World Congress of Neurology		 Prof Gen Sobue (Japan), Prof Matthew Kiernan (Australia)
> Experience from European ALS Registry (ENCALS), USA ALS Registry, Japan ALS Registry and Research

> PACTALS registry proposed – web-based, overarching IRB approval, hosted on 1 platform, governed by Steering Committee

> Preliminary data – Standards of ALS/MND care in PACTALS countries (Dr Yutaka Ogino)
> Standardizing research methods in PACTALS (Prof Fan DS)

 Satellite meet
2017 6th meeting in Boston, USA (Dec 2017)
> in conjunction with Int ALS Symposium		 Satellite meet
2018 1st International Meeting of PACTALS (July 2018) in Seoul, South Korea > First standalone meeting for PACTALS, 220 attendees

> PACTALS Seoul 2018: https://pactals.org/conference-information/

https://www.youtube.com/watch?v=b99YiTInT-I

 Standalone Meet
2018 7th meeting in Glasgow, Scotland, in conjunction with Int ALS Symposium > Minimum Core dataset for patient registry – facilitate future studies between cohorts
> Org chart proposed – Core office members (President, Vice-President), ExCo members (country leads)

> Next Satellite meet at Int ALS/MND Symposium in Perth, AUS (Dec 2019), Next PACTALS 2nd Int Symposium in Nagoya, JAPAN (2021)
2019-2023 COVID
2021 2nd PACTALS International Symposium in Nagoya, Japan (Sept 2021) PACTALS Nagoya 2021: https://confit.atlas.jp/guide/event/pactals2020/top?lang=en Standalone, Virtual
2023 3rd PACTALS International Symposium in Kuala Lumpur, Malaysia (Sept 2023) Insert link to Education tab with congress videos here Standalone
2024 8th Satellite meet in Montreal, Canada (Dec 2024) Satellite meet
2025 4th PACTALS International Congress in Melbourne, Australia https://www.pactalscongress.com/ Standalone
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