Subcommittee on Neurological Disease Committee on Dec. 7th, 2010

[Patrick Brown, Conservative, Barrie, ON]

What type of stuff is required from a researcher that may not be necessary that you have removed from your application process?

[Dr. Jack Diamond]

Well, here's one right off. The most wonderful summary of any research project is that provided by the applicant. CIHR requires that people describe in summary what the application is about, but it's already there. All they have to do is print it off and send it round to the panels, and that's what we do. So they have a summary. They don't have to do it themselves. How can they improve upon the applicant's summary? That's one thing we do.

The other is that we don't require such a long description in words. We do invite them to talk about it when the panel meets, from their own notes, but they don't have to provide it in detail beforehand. These are two specific items that we do that help our reviewers and applicants.

Also, our application has only five pages; CIHR's has 20 pages. Many agencies in the States are going to a five-page application. It's difficult at first to write a five-page application when you're used to being able to spell out everything in 20, but that's what we do.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Diamond.

We'll now go to Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Madam Chair.

Something that hasn't come up in this committee is brain banks. I'm wondering if you can address what brain banks currently exist in Canada, their importance, what data should be collected, and any recommendations you would like to make to this committee about brain banks, please.

[Deborah Benczkowski]

We do have one brain bank in Canada. I'm saying this because I was recently at a collaborative meeting with a number of researchers from across Canada and CIHR--and I'm going on my memory of that meeting. My understanding is that we do have one brain bank. I believe it's in the Maritimes. Part of the conversation at that meeting was around the idea that it's not critically important to have brain banks in Canada because there's so much collaboration now.

[The Chair, Conservative, Joy Smith]

May I interrupt to ask you something? You've made the statement about this brain bank. You don't know for certain.

[Deborah Benczkowski]

I don't know for certain, but I heard this at a meeting I was at. It will need to be double-checked.

[The Chair, Conservative, Joy Smith]

We will double-check that. Thank you.

[Deborah Benczkowski]

I heard at a meeting that there is only one brain bank in Canada.

[Dr. Jack Diamond]

I agree. I think it's in the Maritimes.

You did ask what was required of a brain bank. It's not just a question of people. We often receive letters from people offering to donate their brain. To work efficiently, a brain bank has to have a complete and accurate clinical picture of what that patient had been through, the whole history and final diagnosis—everything has to be there for it to be useful. It's not adequate just to have the brain; we need those notes, and that isn't always as easily obtainable as you might think.

[Shannon MacDonald]

I would like to comment...and the only reason I know this is I spent a lot of time with a neuropathologist one day when we were originally scoping out the national population study. There are actually many brain banks in Canada, several big ones. The problem is, much like what I spoke about in terms of registries, they're not linked. They're not part of a system. The one in Halifax doesn't necessarily talk to the one in Regina. They often tend to be connected to a particular researcher, clinician, or team.

The other piece is that a funding model isn't currently in place to support a system of brain banks. So there isn't information sharing between them. They're perhaps not collecting or using information in the same ways so that there can be knowledge exchange. And like researchers, they—it's another type of research. So they are in a similar position where they are working very hard to identify sources of funding.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Ms. MacDonald.

If we wanted to make it more holistic, so that they talk to one another, what recommendations would you make to this committee? That's going to require infrastructure, funding....

[Shannon MacDonald]

I go back to the recommendation we've made around the national brain strategy overall, which is that we've come a long way, but a tremendous number of conversations need to be initiated and facilitated. I would suggest that a brain bank conversation is one of those things that's part of a research strategy, part of a national research approach to neuroscience in Canada, and there probably hasn't been the convening of a conversation of neuropathologists and people who can tell us the benefit of having brain banks. What can we learn through brain banks? To some of us the idea is quite gory, but to others it's the stuff life is made of because it's a wonderful source of information and potential new findings. I would suggest that like everything in our proposal for a brain strategy, we need to begin a process of consultation, of convening some of those conversations, so we know what the really important issues are and come up with some ideas of how to move forward.

[The Chair, Conservative, Joy Smith]

Thank you.

Ms. Benczkowski, you started to comment on the brain bank effectiveness and we were interrupted. Would you further your thoughts on that? It goes along with what Dr. Duncan is asking.

[Deborah Benczkowski]

At the meeting I was at recently—and I apologize if I had the wrong information--they were talking about Alzheimer brain banks. Maybe that's the distinction. One of the comments I heard from a number of the researchers who were in the room—and these were all Alzheimer's researchers—was that some things are not worth building a huge infrastructure around when there are so many collaborations available around the world, particularly the number of brain banks across North America that Canadian scientists have been able to take advantage of. That was the conversation I heard. I'm not taking a position on this. I'm just saying that was a conversation I heard at a meeting of Canadian scientists just a few weeks ago.

[The Chair, Conservative, Joy Smith]

Dr. Duncan, I'll give you one more minute.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you.

I appreciate all your comments.

I'm going to ask a hard question here, if it's okay, but I think we have to ask it. We have heard over and over--and I'm a very strong supporter of a national brain strategy, as you all know--that the Alzheimer Society has also called for a pan-Canadian dementia strategy.

What would be the main components of that, and how do we combine that within a national brain strategy?

[Deborah Benczkowski]

All of our components for a dementia strategy are included in the components for a national brain strategy, because we work very closely with NHCC.

It was really a question of timing when we wrote the Rising Tide report and we were involved in pulling together the recommendations. We were probably first out of the gate, so we're now at the point where we're totally supportive of the brain strategy. We feel that all of the issues we have put forward in Rising Tide are all addressed in the brain strategy. That's why we're behind that 100%.

[The Chair, Conservative, Joy Smith]

We will go to Mr. Brown.

[Patrick Brown, Conservative, Barrie, ON]

Thank you.

Thank you for all the comments so far.

I want to expand a little bit more upon the question I was asking last time about the research process, because that's something that is solely federal, and a lot of the things we deal with overlap different jurisdictions. Jack's comments were certainly interesting on the difficulties.

Shannon, have you noticed that with other neurological disorders, too? Is this a common thread that you've found among the variety of groups that Neurological Health Charities Canada represent?

[Shannon MacDonald]

Do you mean the difficulty in funding research?

[Patrick Brown, Conservative, Barrie, ON]

One is the lack of research dollars, but two is the process of filling out the applications.

[Shannon MacDonald]

Yes, there is definitely a need for a very solid peer-reviewed research process, so that we know that good work is being funded and the work that's being funded has the feasibility of delivering results. So the scrutiny and the review process is important, but that's not to say that it can't be improved upon.

Certainly, I know that the majority of NHCC members do fund research and they do run peer-reviewed processes. I'm not aware of the detail of those processes, but the Alzheimer Society of Canada would be one of those organizations. I would suggest that most are operating in a very similar fashion. All would meet, in my opinion, CIHR's expectations around what a quality review process includes.

Certainly, when you get to the issue about funds, there is no question that every organization.... This committee has been incredibly helpful in raising the profile and awareness of neurological conditions, and as profile and awareness is raised, so too is interest in the field. As we continue, one of the things that the neurological charities do very well is to fund emerging investigators, investigators who perhaps don't have enough behind them yet to qualify for a CIHR grant. We want to keep them in Canada. We want to keep them excited about the field. They need to be funded by somebody, and the health charities play a very important role in, as Jack talked about, the training programs. So yes, there is always really good science left on the table. Most organizations would say they probably leave no less than 50% of really good fundable projects on the table.

[Patrick Brown, Conservative, Barrie, ON]

Another question to you, Jack.

I know in your 2008 report on Alzheimer's disease you projected that by 2031 there would be 750,000 Canadians with Alzheimer's disease or dementia. Why are we seeing a growing rate of Alzheimer's disease in Canada? Are there any indicators that would suggest that there are any causes for that in society? Why are there more Canadians--

[Dr. Jack Diamond]

The usual explanation we give for this, which I think applies across--