Hello, everyone. My name is Annabelle Saylor. I'm the chief of staff here at the Montreal

Neurological Institute Hospital, the Neuro, and chief executive officer of the Tannenbaum Open Science Institute. It is a great pleasure for me today to present to you a little bit our journey to become the first ever open science institution through the creation of

the Tannenbaum Open Science Institute. So a little bit of background about the Montreal Neurological Institute Hospital that we call very friendly, the Neuro. It is a Montreal-based organization both affiliated to McGill University for its research and teaching mission and also

to McGill University Health Center for its patient care mission. So as you can see here on that slide, it's really locating downtown Montreal in Quebec, Canada. So the Neuro was founded in 1934 by the very famous neurosurgeon, Dr. Penfield, and it is now recognized we're

leading integrated neuroscience research, teaching, and clinical center, most specifically in neurological diseases. We really count amongst our walls, I would say, a unique breadth of expertise coming from genes to cells to animal models to patients, and patient care is a critical portion of our mission. And that really makes the Neuro a very special place

where we can basically both make real advances in our understanding of the mechanism of these diseases, but also increasing our ability to develop treatments for these specific pathologies and diseases. Neurological diseases, as you might know, are recognized

at the most unmet medical needs of all times. They really represent tremendous human suffering, but also an important economic load, and this is basically globally. Since 2016, you might know that neurological diseases basically became the leading cause of disability

and the second leading cause of death worldwide after cancer. For now, we unfortunately have very limited treatments and basically no cures to alter the course or totally eradicate these diseases. Just think about Parkinson's disease, for instance, who's got discovered 200 years

ago, we still have very little option to slow down the progression of the malady of the disease or just eradicate the disease itself. So we felt some sort of a frustration, a sense of urgency that we definitely needed to shift the pace and do things drastically

differently. That's where we saw open science as a potential game changer with huge potential for the neuroscience field. We see open science as a way to accelerate the discovery of novel treatments that fundamental advances definitely need in the field of neuroscience.

The complexity of the brains also necessitates and requires massive collaboration and global collaboration. Also, you know that the notion of aggregating and putting together a massive amount of data from various sources, formats, it is a very, very complex and collective endeavor.

So we feel that basic neuroscience basically needs open science to break down the barriers of collaboration, to allow fast and reliable reproducibility of data, to leverage the potential that big data now offers us and the notion of personalized medicine, precision medicine.

It also can faster identification of novel neuro therapeutic targets, and it definitely reduces time to early clinical trials, which is so important when you think about accelerated discovery to benefit our patients. And last but not least, it's a better use of public money.

For us at the neuro, open science has been a mission enabler. We see open science as a way to expand the impact of research and accelerate discovery. And we don't do open science for the sake of open science. It's not the goal in itself, but it's a means to a higher end,

which is basically our mission to understand the brain, find cures and effectively treat people with neurological disorders. So time has come for open neuroscience. The Tannenbaum Open Science Institute was crystallized in 2016, five years ago, thanks to a large donation by Mr. Tannenbaum family donation. Basically five key components

of open science, open data and open access, which are more traditional components of open science, on which we added different layers. One of them is the open biorepository, and I'll get to that in a second, the open early drug discovery, and also a position on IP intellectual

property compatible with open science. And I'll explain that in a second. So the open biorepository, CBIC, so the neuro has put in place that institutional platform called the clinical biospecimen imaging and genetics repository, which is an open platform,

basically constituted of deeply characterized cohorts of patients, most specifically focusing on Parkinson's, ALS, intellectual disability first. And we very recently opened the data portal of that platform that was launched on June 10th,

2021. And I really invite you all to go and check. Basically that platforms comprises a de novo collection of more than 30 K specimens for more than 2000 patients, both, you know,

affected with neurological diseases, but also to be able to compare with healthy controls. And you have on that slide, the list of the various specific diseases that we include within the platform. And we have through that platform, more than a dozen completed and ongoing

collaborations with industry and academic partners, both provincially in Quebec, but also nationally in Canada and also internationally. And all of the data from industry collaboration, this is worth mentioning, has been returned to the platform and data from academy collaborations

will be returned following the embargo period. So the notion of open science is very key in that endeavor. Of course, we are very diligent about securing and guaranteeing patient privacy. So we have a very strong and robust ethical framework. And we are now reaching

the version 2.0 that got approved very recently by our research ethics board. We have many, many active collaborations, both nationally and internationally, and both with the scientific community, but also with industry partners. We are presently working with other stakeholders to complement the current database and cohorts with important neuro-based tumors bank,

we're talking here 1000 samples, and an important collaboration with the Douglas Institute Brain Bank, which is another 3000 brains, basically, that's going to be included within the platform. And the platform is also used as the data and biospecimen platform

for many new emerging centers and initiatives, both in Montreal, but also across the country. I can cite a few like the Israeli Center for Autism Research, the Canadian Open Parkinson's Network CAPTCHA-ALS, which is a new initiative, more specifically on ALS or Lou Gehrig disease.

So we you could see that the platform, you know, driven by the neuro has now expanded nationally. The Neuro Early Drug Discovery Unit, called very friendly EDDU, is basically leveraging our capacity to use these patient samples to create IPS cells, and to build

basically industry standards assay, and high screening compounds to work with industry. I need to say that that platform has been extremely successful over the course of the last few years, and have managed basically to secure more than $30 million Canadian,

one third coming from industry contracts, one third coming from philanthropy, and one third from grants. Many, many agreements to develop industry standards assays, and implemented automation for screening. We have many collaborations with pharma companies like Merck, Takeda, GSK, and Turmo Fisher. And what's interesting here is that these

companies bring both funds, but also industry expertise. So there is a cross-pollination through that platform that is really worth mentioning. We have also important collaborations with open science drug development companies like Icarus, and I'm inviting you to look at

their website, and the M4AIN, which is Medicine for Neurological Diseases. This group really was very successful in attracting a great pool of research professionals interested to work in academia with pharma. The notion of IP compatible with open science

is something I really want to take some time to explain. So we decided to have a guiding principle on no restrictive intellectual property. That means that we basically looked at the kind of research that was done within our walls at the neuro. And that research was so early stage and so far from the pre-competitive or competitive field

that we decided that it was not worth taking any patent that would basically block access to knowledge. But that we basically needed IP strategy that wouldn't block access and that would basically allow sharing of knowledge. We could think about instances like data protection

as an example. So this is not a reaction against patents because patents are definitely useful at the competitive stage, and they are part of the ecosystem that accelerates and would benefit ultimately our patients. But we thought that the kind of research that

we were doing at the neuro was so early stage in the process that patents actually were more blocking than actually accelerating knowhow and sharing of knowledge. I want to say a few words also about the grassroots open science committee, which is basically a committee that has been put together more than three years ago now.

Joanne Stratton is the co-chair of that committee with myself. And this group really represents a cross section of different expertise, different career stage, some of them have more of a clinical focus, some of them have more of a research focus.

They have also very different expertise and experience in the field of open science practice, and they come from very different and diverse research disciplines across neurological disease. That group has just been renewed a few months ago, and we're very happy to have a mix of

returning but also new members. Basically, I'm telling you about the grassroots committee because their spirit is basically to leave no one behind. And what that group is basically doing within the walls of the neuro but also externally is to promote the benefits and ease of open science,

to support the research community through education, personnel, incentives, awards, prizes, increase awareness of existing open science best practices and tools, both internally at the neuro but also externally globally, and also by measuring uptake through openness metrics.

So basically, TOSI, the Tannenbaum Open Science Institute, when it was created, had the double mission to both implement open science practice within the neuro, but also to create some sort of a snowball effect across Canada. Basically, the way TOSI has managed to do

that was to fund seed projects, buy-in projects, and have some sort of financial mechanism to support, you know, ongoing implementation of open science practice within our other neuroscience

centric centers across Canada. So you have on that slide the details of the various programs, and we also had in parallel to that open lines with important stakeholders across the country. So I'm mentioning here the governments of Canada and government of Quebec, who both have been very,

very supportive and have been promoting open science practice more and more over the course of the last years. I mentioned here the chief scientists of both Canada and Quebec. So Mona Nemer is our Canada chief scientist. She recently signed the framework, Canada framework for open science, which is basically aiming at putting all of federal

supported research as open and accessible as possible. I'm mentioning here the Fondre Champs du Quebec, led by our Quebec chief scientist, who very recently put open science as the new strategic plan, and the Fondre Champs du Quebec

just very, very recently, a couple of weeks ago, joined the coalition S. So we are very proud of that important progress. The Canadian Institutes for Health Research, which are basically important research vendors, now put open science as a prerequisite and open access.

We're very encouraged by that, but also important disease organizations that basically are starting to enforce the practice of open science through their different research grants. So I can mention here Brain Canada, ALS Canada, Parkinson's Canada, and the Canadian Brain Research Strategy, which is basically researchers driven new strategy

to develop neuroscience field in Canada, and that very recently put open science as one of the key pillars and important strategic blocks. I've mentioned to you that TOCI has been successful in engaging other neuroscience centers across the country, and here are lists of the initial

ones who basically mentioned interest. Some of them are more at the early stage of drafty guiding principles. Some of them are well more advanced than that, and we feel all very encouraged by that important progress over the course of the last couple of years.

So very briefly, a quick reflection on our first years. When we started that open science practice five years ago, some hesitancy or reluctance were coming to us saying, you know,

did your open science policy basically restrain young researchers to join the neuro? Actually, no, the answer is no. And we feel absolutely the opposite. So we experience a unique rejuvenation of more than 30 new researchers joining the rank of the neuro.

The Open Science Grassroots Committee is another good example and testimony of that engagement. So these people are basically very active, very engaged, very contributing to the whole endeavor, and they're really pushing to have more and engaging to the open science practice. Another question that people were asking us at the very beginning is,

will that practice of open science basically prevent new collaboration projects with external stakeholders? Will that be some sort of a roadblock to stimulate new collaboration? And again, the answer is absolutely not. We have felt over the course of the last year an important increase in the number of external collaborations. And we also felt that the

practice of open science and the important institutional position that we took for open science actually allowed to have, I would say, non-traditional collaboration. So for instance, with AI companies. And that was extremely promising and very encouraging.

We have basically many, many Quebec-wide, so at the provincial level, but also national-wide projects that are now going under the open science umbrella. At the very start, people were wondering, will ethics be an issue? Ethics was not an issue. Ethics took obviously time because you need to think about that thing correctly. So it took us many,

many months to put together an ethical framework that would allow sharing of this data. But now that the robust ethical framework is in place, both our clinicians, but mostly our patients feel extremely empowered to take part of the research endeavor. Another question that was raised at the

time is, will pharma see the value of open science and engage into open science? The answer is yes, again. I was telling you a bit earlier in that presentation, the Open Early Drug Discovery Unit managed to raise more than $30 million in a couple of years. And one-third of

that funding actually comes from pharma companies. The question was, will donors, foundations, get it, understand the notion of open science and support it? Absolutely yes. We saw basically a 400% increase in terms of dollar money contributed to the neural. Most of the donors

actually think that science was already open. So for them, the practice of open science is a no-brainer. Then the last question that was raised at the time, are other academic institutions reluctant to embrace open science because of the position of IP?

I need to say that some of them still are, but we've seen progress in that matter. Five Canadian institutions have now embarked on the practice of open science to various extents. Several international institutions have also expressed interest. And I want to mention more specifically recent progress at the Stanford University with the creation of the new Centre

for Open and Reproducible Science. So open science is definitely transforming neuroscience research in Canada. And we are very blessed to the Larry Tenenbaum Foundation to create the

Malamaba Open Science Institute that managed to crystallize and transform our dream into something extremely concrete that is starting to demonstrate lots and lots of impacts moving forward. I'll leave you with one last slide about the neuro open science events.

So we organize once a year an annual open science symposium. This year it's going to be on November 23rd and November 24th. So please join us if you're capable of. We also started a while back a new webinar series called Open Science in Conversation,

where basically we have an important conversation with important stakeholders across the globe on specific matters related to open science. This is usually a monthly webinar. You have the website here. And we very, very recently, a few weeks ago, launched in neuro webinar on open science best practice, which is more of a hands on workshop type

discussion on specific tools and platforms and best practices. The first one was on data management plans. The second one was more recently about the launch of the clinical biological imaging and genetics repository. So I'll leave you now with our website if you want to hear

a bit more about open science at the neuro. And I thank you all for welcoming me today. Enjoy the rest of the conference.