Hopefully this open data initiative will help AD research ...

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circular
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Hopefully this open data initiative will help AD research ...

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'Montreal institute going ‘open’ to accelerate science'
Guy Rouleau, the director of McGill University’s Montreal Neurological Institute (MNI) and Hospital in Canada, is frustrated with how slowly neuroscience research translates into treatments. “We’re doing a really shitty job,” he says. “It’s not because we’re not trying; it has to do with the complexity of the problem.”

So he and his colleagues at the renowned institute decided to try a radical solution. Starting this year, any work done there will conform to the principles of the “open-
science” movement—all results and data will be made freely available at the time of publication, for example, and the institute will not pursue patents on any of its discoveries. Although some large-scale initiatives like the government-funded Human Genome Project have made all data completely open, MNI will be the first scientific institute to follow that path, Rouleau says…

The insistence that any organization or institute that collaborates with MNI will also have to follow open-science principles…
http://www.sciencemag.org/news/2016/01/ ... te-science
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SusanJ
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Re: Hopefully this open data initiative will help AD research ...

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They are definitely fighting the uphill battle. Hope they succeed. My last large project involved working with multiple universities and we ran into some patent issues over intellectual property we were hoping to integrate. Patents are a reliable source of money for universities, so whenever money is involved, it will certainly be interesting to watch how universities respond.
circular
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Re: Hopefully this open data initiative will help AD research ...

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Agreed. You may have noticed that researchers there can still go for a patent, they just won't have the university helping them to file it, but it's certainly a game changer. I like that they're going to track the success or not closely.
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RichardS
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Re: Hopefully this open data initiative will help AD research ...

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Definitely something to watch. I've been involved with a multi-center research program for a long time that pays very close attention to patent stuff. I like the open science initiative and really hope to see examples like this succeed so that other institutions will feel confident about doing the same.
J11
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Re: Hopefully this open data initiative will help AD research ...

Post by J11 »

circ, this is such amazing news!

The story has been floating around out there for about a month now, though it really helped to put it on the table so that the forum could
add some input.

It is somewhat disappointing that in life the right things often happen for the wrong reasons.
The Montreal Institute likely made the proper choice because they would be expected to be outside of the group think of
other such research centers. It is difficult to enter the straight and narrow of approved thinking if you do not speak the
same language as the brainwashers.

This has given me such a great day of positive energy.
Thank you circ!

It is clearly true that having a more open approach to science would be helpful.
Whenever I think about the articles cited in the rs1129844 thread
viewtopic.php?f=4&t=1606 it astonishes me that AD researchers typically
would have to start at square 1 to do a replication study. In the first cited study on the thread Supplementary Table 5
reports only 5 homozygous carriers of the beneficial allele of rs1129844 out of a replication sample of about 150.

How could there possibly not be a standing freely accessible online database of AD patients with full gene chip results?

This would allow researchers an immediate replication sample. As it is now, often the best we can do here on the forum is
ask around other members. The AD research community really should be doing better than this!

Looks like we are setting up a new groupthink based on doing the right thing.
http://www.ncbi.nlm.nih.gov/pubmed/26764160

We need more people who have earned a Silicon Valley MBA to create the sort of change we need to cure AD etc. .
Actually going through the thought process of defining what your organization's reason for existence can be very useful.
The Montreal Institute clearly stated they were not motivated by making money (It would perhaps have been
better to state this as they want to maximize their value generation, though open data sharing.).

The Montreal Institute obviously should be praised for their bold leadership, though why are we even talking about
something that would have been done by any Valley company decades ago?

I do not see how those institutes that receive all this taxpayer funded money can continue to withhold the full datasets
for those who have paid for it.

I definitely would not want to be the Director of Research who had to answer why, as a publicly funded scientific
institute, I had not allowed open access of datasets to help various disease communities, including Alzheimer's dementia.
I would be all the more reluctant if this were to be broadcast life on C-Span.


A more glaring example of what I am referring to is IGAP and Alzgene.
"Once IGAP has agreed to share their data on AlzGene"
Apparently three years of negotiations have still not resulted in a sharing agreement!
Perhaps an agreement will never be reachable, due to the backroom power politics involved.
One starts to wonder, whose side are they on?
http://www.alzforum.org/alzgene

Having a readily accessible dataset would make life easier for so many of us.
I have been trying to cope with an exome file with over 60,000 variants for more than a year now.
Most of the genetics community have very little idea how to narrow down such a huge list to focus in on the
likely functional variants. Uploading 100,000 exomes of people who experienced few if any health challenges during
their lifetimes would go a long way to narrowing down the search space for our loved one.
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