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/ t

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) https://pactals.org/education/ 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