Share nicely!

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The phrase ‘Share nicely’ is one that I associate with children sharing their toys, sweets and perhaps even Wii time. However, it works well in a research context too. A steady momentum has been building of new ways to share, so I wanted to write a post to highlight them.

For the last 23 years the MND Association has been encouraging researchers around the world to swop results, tips on how lab experiments work best and share ideas, at the International Symposium on ALS/MND . They might also share email addresses, phone numbers and who knows, even Twitter usernames too!  This three day conference is organised by us every year, hosted in a different city around the world. It is the largest medical and scientific conference on MND and the premier event in the MND research calendar, attracting over 800 delegates, representing the energy and dynamism of the global MND research community.

A key part of preparing for the International Symposium is the production of the conference abstract book. As Sam explained in her post in August , the abstract book is essentially the conference ‘catalogue’ or guide. It contains a summary of each presentation that will be made in Chicago next month – over 90 talks and hundreds of ‘poster’ presentations are listed. Alongside the science, the lists of the researchers involved are included too.

 Last year, this catalogue was included in the conference delegate packs when they arrived at the meeting, and the same week the abstracts were posted on the MND Association’s website (they are still there!).

You can read the Symposium summaries now!

But this year we’ve done things differently. The first thing that we’ve done is make the abstract book (the catalogue) available online a MONTH before the conference. The full text of the abstract book has been available since Monday, 5 November. The second big thing is that they are available to access for free from the ‘ALS’ journal website. We hope that more researchers will find them here, rather than on the MND Association’s website (where they’ve been before). Making these abstracts more widely available is part of a broader push by research funding bodies and policy makers to make the most of scientific data and information –a movement known as ‘open access’.

Symposium abstracts available online now

Open access – read the research results now, and for free

Away from the conference room, a standard way that researchers make their results known to their peers, and the world in general, is to write up their experiments in a research paper. Papers are reviewed by those working in a similar area, before they are accepted for publication. (If you want to know more about this process, there’s a great explanation on the Sense about Science ‘s publication ‘I don’t know what to believe’ ).

Publication where? you might be asking – here’s where the debate begins! Most scientific papers are published in research journals where either individual researchers, or their libraries pay to be able to read the article in full. So, if you or your library doesn’t pay, you can’t read it! The approach preferred by the open access movement is that the researchers pay a fee to publish their work, then anyone can read it for free as soon as it is published. The costs of paying to have your research paper published ‘open access’ typically represents approximately 1% of the costs of conducting the research in the first place.

At the MND Association, we believe that by mandating our grantees to publish their results open access a greater number of people will read them – moving us faster towards our goal of a world free of MND (more info on our open access policy here).

Over the last year, this topic has been discussed more broadly – when the government announced its commitment to open access in the summer it made newspaper front pages! More and more organisations are signing up to open access publishing – last week an online database for finding research papers re-named itself from ‘UK PubMed Central’ to ‘Europe PubMed Central’ ( ), reflecting the broader commitment to sharing research results in this way.

Catch the Chicago buzz!

An easier way to enjoy the buzz of the International Symposium on ALS/MND is to read the reports from the meeting on this blog, rather than read the full summaries available open access. We are already looking at which topics we’d like to report on, avoiding the scientific jargon where-ever we can. Let us be ‘Q’ to your James Bond!

5 thoughts on “Share nicely!

  1. Dear Belinda and team,

    Congratulations and kudos to the MNDA team for these two historic advances for patients everywhere. I completely agree on the importance of open access ( and increasing the visibility of the ALS/MND Symposium abstracts will be a boon as well. Even better, the abstracts are presented alongside the contact details of the corresponding authors, so it will be easy to follow up or get more detail from researchers if interested patients (or other researchers) have questions or suggestions.

    I hope other patient organisations will take these steps as a prompt to consider their own policies; so much of the research conducted through funds raised by patients and possible only through their participation is inaccessible to them, which seems cruel at a time when we are asking patients to be more empowered and do a better job of self-management.

    Where could this trajectory take us? I would love to live in a world where Symposium talks are livecast on the web and edited to be high quality professional updates on new research findings. I would love to upload a PDF of my posters or slideshare alongside abstracts. And I would love an innovative way for patients to not just read, hear, and listen to what’s going on but have an active channel to communicate to us, the researchers, in real-time through the use of technology. ALS Untangled and this latest announcement means that ALS/MND is leading the neurology field (if not all of medicine) and I hope we can continue to stay in the lead of patient-centricity for research

    Best wishes


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