Health Committee on May 7th, 2013

[The Chair, Conservative, Joy Smith]

Good afternoon.

Welcome to the health committee and to the technological innovation study.

We're fortunate today to have as one of our witnesses, Ms. Jacquie Micallef, manager, member relations, Policy and Partnerships for Neurological Health Charities Canada.

Welcome.

We have via teleconference, Dr. Allan Micheil Innes, national coordinator for Orphanet Canada.

We're very happy that you're both here.

The procedure is that there will be two 10-minute presentations, followed by our Qs and As.

Dr. Innes, would you be so kind as to give us your 10-minute presentation.

It's hard with a video conference, but to keep you within the 10 minutes, I'll try to send you a signal when the end of the 10 minutes is coming up.

[Dr. Allan Micheil Innes, National Coordinator, Orphanet Canada]

Thank you, Madam Chair.

My name is Micheil Innes and it is an honour to address the committee today.

I'm a medical geneticist practising at the Alberta Children's Hospital in Calgary and at the University of Calgary. I'm also the national coordinator for Orphanet Canada, which I will discuss.

Today, I would like to emphasize the importance of securing an accurate diagnosis for all patients and families with rare diseases, with the goal of improving their health and wellness, as well as the current barriers that exist to achieving this goal.

As you have likely already heard, a rare disease is defined as one that affects one person out of 2,000. There are over 7,000 known rare diseases, which affect an estimated one in 12 Canadians. A disproportionate number of the nearly three million Canadians affected with rare diseases are children. As such, rare diseases affect a significant proportion of Canadian families. Most, but not all, rare diseases are genetic. Individuals with rare diseases suffer increased morbidity and mortality. As many as 30% of infants with a genetic disorder die in their first year of life. Children with rare diseases have more hospital admissions, with longer and more costly stays. This trend continues into adulthood, as older patients with rare diseases also have a disproportionate number of hospital admissions and costs. Hospital costs are only one factor to consider, as both outpatient medical and non-medical costs are also significant for the patient, their families, and the extended community. Patients with a rare disease face significant challenges, ranging from receiving a correct diagnosis to the availability of treatment and care.

[The Chair, Conservative, Joy Smith]

Excuse me, Dr. Innes, but our translators can't keep up with you.

Ms. Davies said she can't keep up with you in English. Our translators are having some difficulty translating your wonderful presentation.

Could you slow down a bit so the translators, and Ms. Davies, can pick it up?

[Dr. Allan Micheil Innes]

Absolutely. My apologies.

There are many critical reasons to secure a correct underlying diagnosis for patients and their families. First and foremost—

[The Chair, Conservative, Joy Smith]

Could you slow down a little bit because we want to hear everything you say. I’ll give you an extra minute. You're still racing, so we can't keep up to you, doctor. You're way ahead of us.

Can you do that?

[Dr. Allan Micheil Innes]

Yes, I'm sorry.

I'm obviously finding it a little bit difficult from a distance here.

[The Chair, Conservative, Joy Smith]

I know.

Your material is exquisite. You're just brilliant.

Go ahead so we can hear you.

[Dr. Allan Micheil Innes]

Okay, thank you.

Patients or their parents deserve an answer as to their underlying condition. One can only imagine the significant guilt carried by parents of a child with an undiagnosed condition.

A diagnosis is the first step to understanding the natural history and prognosis of the disorder. Receiving an appropriate diagnosis can secure access to services in the school or community, appropriate medical surveillance, and on some occasions an underlying treatment. A diagnosis allows patients the opportunity to reach out to similarly affected individuals locally, nationally, or internationally through the form of patient support organizations. Finally, for genetic conditions, a correct underlying diagnosis can help clarify genetic counselling for the patient and other family members.

Orphanet is the world's online reference portal for information on rare disease. The portal is accessed internationally more than 20,000 times a day. Particularly for individuals diagnosed with a rare disease, it represents a comprehensive database of information, which can contribute to improvements in the diagnosis, care, and treatment of patients with a rare disease.

With support from the Canadian Institutes of Health Research, CIHR, Orphanet Canada with Canadian-specific content is now available. It provides Canadians with access to services in French and English related to rare disease, including an inventory of orphan drugs, a directory of services, clinics, laboratories, research projects, registries, etc. Canada was the first country outside Europe to formally join Orphanet, although in the past year Orphanet has become increasingly global with participation from Japan and Australia among others.

Since our formal launch, announced by the minister in October 2012, we have contacted over 350 stakeholders, and currently have validated information on over 70 such groups on our site. It is our desire that Orphanet increasingly be recognized in Canada by patients and physicians alike as a valuable early and ongoing resource for those with a rare disease.

However, even this basic information is not available to those individuals with a rare disease that has not been diagnosed. It's long been recognized that even in the best equipped medical genetics clinics in Canada or worldwide, more than 50% of patients do not receive a correct underlying diagnosis. There are many reasons for this, including the fact that the condition may be so rare that it has not even been discovered yet, or that the patient's presentation is atypical in some way, so that the diagnosis is not obvious.

Our current approach to genetic tests relies heavily on arriving at a best guess clinical diagnosis and then arranging specific testing for one of the over 20,000 genes in the human genome, with each test currently costing $1,000 to $3,000.

Internationally, there are currently about 2,500 genes for which testing is available, and of these, about 150 tests are available in Canada. As a result, provinces spend a significant amount of money, $18 million in Ontario alone in 2011, for genetic testing done internationally. Each province has developed its own approach to the issue, and access to such testing is quite asymmetric nationally. T

This “diagnostic odyssey”, which refers to the process, often takes years, and the cost for many patients is in excess of $10,000 to arrive at a diagnosis.

Within the last few years a new technology, next generation sequencing, has made it possible to sequence the entire genetic code of an individual in a more timely and cost-effective manner. It can be viewed as 22,000 genetic tests at once.

This technology has been leveraged very successfully by a recent Canadian consortium funded by Genome Canada and the CIHR, entitled FORGE Canada. Through remarkable collaboration of all genetic centres in Canada, this group was able to identify over 180 rare pediatric genetic disorders affecting hundreds of children in Canada and internationally. We were able to identify the genetic basis for 77 of these, and in the process to discover 45 new genes. This shows the value of this testing and collaboration in reaching a diagnosis for families.

These tests are available on a research basis at a cost of $2,000, and now commercially in the U.S. at a cost of approximately $10,000, but these costs should drop in the future. This testing should benefit thousands of Canadians moving forward. However, implementation of these tests clinically will not be trivial. It will require investing in infrastructure, developing approaches to data management and sharing, dealing with unexpected or incidental findings while remembering that we're sequencing a patient's entire genetic code to arrive at a specific diagnosis, and educating countless Canadian physicians and health care providers about these new technologies and their implications.

Of course arriving at a specific diagnosis is also critical in the selection of therapy. Of the approximately 3,500 known genetic rare diseases, only about 200 therapies are currently available. Health Canada's modern framework for the development of orphan drugs in Canada is certainly welcome and essential.

We should not forget that discoveries of drugs with major importance for the general population have often been made by first studying patients with a rare disease.

One such example is the development of the now widely prescribed statin drugs for high cholesterol, which were first studied and developed for patients with rare genetic forms of high cholesterol.

We often hear of the implementation of personalized medicine into health care. Individuals with rare disease require personalized medicine now, and it is anticipated that the implementation of new technologies currently used to diagnose and guide care for patients with rare diseases will ultimately be applied to all Canadians to understand the personal aspects of their disease, as well as their response and side effects to therapies.

I want to conclude my remarks with an international perspective. In 2011 the International Rare Diseases Research Consortium, IRDiRC, was launched. This consortium has as its ambitious goals 200 new therapies for rare diseases and a means to diagnose the rarest diseases by the year 2020. Members of this consortium consist of organizations that have committed to invest $10 million or more over five years to research projects and programs related to the international rare disease consortium's objectives. Member groups include the European Commission, several of the U.S. National Institutes of Health, and importantly for us, both Genome Canada and CIHR.

The executive committee is currently chaired by a Canadian, Dr. Paul Lasko, scientific director of the CIHR, as is one of the three scientific committees of this body. IRDiRC held its first meeting in Dublin in April 2013. Canada was well represented with over 15 individuals from CIHR, Genome Canada, Health Canada, CORD, and academic medicine attending.

It's important for us to realize that the rare disease community is a global one, and collaboration will be essential to describe new rare diseases and identify the underlying basis to allow for diagnostic testing, to provide support for patients across borders, and to lead toward development of new, rational, and cost-effective therapies.

Canada is exceedingly well positioned to be a major leader in this field, with the realization that collaboration is critically important in areas of science where historically competition has been the norm.

I thank you for your attention to my initial remarks. I am optimistic for a future where, within Canada's health care system, patients and their families affected by rare diseases will be able to access a timelier and more cost-effective diagnosis, coupled with access to rational and affordable therapies. Our patients deserve this, and ultimately it will be associated with a healthier and more productive population.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Innes, for that very clear analysis of rare diseases. We appreciate it and look forward to asking you some questions shortly.

We will now go to our other guest, Ms. Jacquie Micallef. Could you please give your presentation.

[Jacquie Micallef, Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada]

Thank you for inviting Neurological Health Charities Canada to testify in front of the committee once again. It has been our pleasure to stand before this committee in the past to testify on behalf of the estimated 5.5 million Canadians living with neurological conditions in Canada.

I would also like to take this opportunity to thank the committee for putting forward many of NHCC's recommendations in your report, “Focussing on the Brain: An Examination of Neurological Diseases in Canada”. The support of our recommendations is very encouraging. It gives the individuals and families we represent a renewed sense of hope that the attention that has been given to research in neurological conditions will continue to be supported, and that attention will be equally given to the translation of the new knowledge we're receiving, which will eventually result, in our vision, in a direct impact on the Canadians who we are here to represent.

As many of you who are familiar with our coalition know, we represent 24 organizations that support Canadians with a range of neurological conditions, including neurodevelopmental, neurodegenerative, chronic, and episodic conditions. Among these varied conditions, NHCC also has a strong representation of rare neurological conditions. These conditions are small in number of incidents, but they are immeasurable in terms of impact on the families, individuals, health care systems, and the Canadian economy.

Individuals, families, and organizations impacted or representing a rare condition are often on the losing end of a numbers game. Often, certain numbers of people are needed in order to conduct clinical trials for new drug therapies, health professionals have little experience in practice with their particular conditions, criteria for assessments are often based on the characteristics of more common conditions, and organizations have small funding bases, which lessens their ability to fund research, programs, and education focusing specifically on their condition.

The following are some proposed solutions, ideas, and comments that NHCC would like to put forward on this topic.

The first is the orphan drug framework for Canada. We would like to say that Health Canada’s commitment to developing a framework for the designation, authorization, and monitoring of orphan drugs is a positive step forward in the treatment of rare conditions. NHCC member organizations, especially those dealing with rare conditions, have strong global relationships, in part due to the fact that there's a small number of experts to draw on in any one country, so that makes their international outreach even more critical in finding those champions.

This framework will provide a place to formalize and elevate that level of international sharing, to elevate the discussions on rare conditions, and to bolster pharmaceutical companies’ interest in developing, testing, and marketing new drug therapies for rare conditions. Also, the knowledge translation and exciting innovations in the realm of pharmaceutical treatments will undoubtedly benefit many of those individuals.

Under other treatment options, we would like to mention the following.

On the term “drug” in the orphan drug framework, one comment we do have is that it may not capture the variety of treatment options that are being researched for rare conditions. An example would be retinal eye disease. The expanded innovative treatment options for these types of conditions include the possibility of stem cell therapy, gene therapy, and prosthesis. These possible treatments may not have a pharmaceutical component, and we would see it as very unfortunate if that type of innovation were to be stalled because it wasn’t captured within that framework. We’d like to make sure that either it’s captured or there is a place for that type of innovation to be considered as well.

Communication devices are another exciting type of innovation. Rare conditions that develop in infancy or young childhood—and, as Dr. Innes said, a number of them do—and that limit a person’s ability to speak or write, or to provide common physical movements in order to communicate, can often lead to the person being presumed to have a low intellect, an inability to experience emotion, or a lack of understanding about the world around them, and the assessment tools that are used to determine cognitive functioning often focus on the physical cues.

I'll give one example. We have representation from a group representing Rett syndrome, which is a very rare condition mostly affecting women. It starts in infancy and is usually determined at around six months to 18 months. The daughter of the president of an organization that we have at the NHCC has Rett syndrome and always has been assessed as having the capacity of a six-month-old. She's 25 years old, and they have always presumed that her intellect was not above that of a six-month-old.

But this exciting new development of eye-gaze technology, which allows her to focus her eyes on symbols or words and different pages, has just opened up the world. They were telling me a story about it the other day. She was at a conference on Rett syndrome. She got agitated, was staring at the word “no”, and by using her eyes was flipping through the pages, which is the way this eye-gaze technology works, to say that she didn't want to be at the conference and she did not want to continue to hear about Rett syndrome. Now, a six-month-old would not be able to express themselves in that way.

It's just amazing that with a slight eye movement, these people are able to gain autonomy and to have a better quality of life, and especially so for the caregivers as well, because for someone whose communication is limited, it's a constant guessing game. These families are now saying that this technology is wonderful.

It does cause a lot of fear and anxiety when you realize that some of the care you've been giving is no longer going to work. My contact said, “I've been tucking her sheets around her for 25 years and maybe she doesn't want the sheets tucked in, and now she's going to tell me.” There is that sort of thing, but it's just amazing that she can gain a sense of autonomy and improve her quality of life.

We've seen this eye-gaze technology. There is a clinician in the United States who has been using it with girls and women who have Rett syndrome. Even a child as young as three years old is using this. In one particular study, she indicated that she felt something was wrong, that she was tired, and that she needed to rest her eyes. A 20-year-old woman indicated that she was hungry, even indicating what her food choice was, and that she was thirsty. This technology has been used with over 100 girls and women in this particular study. In concert with appropriate training and augmentative communication services, it has been found that this technology is highly successful.

In terms of our recommendations, we would like to see some investigation into what is available in the provinces in terms of what is covered across the country. We do know there is a cutting-edge technology, this eye-gaze technology, that is now available in Ontario. We haven't done the investigative process, but we need to know what is covered by the provinces, because we do see this as a really important thing for people with this type of condition or any type of communication-limiting condition.

Genetic fairness is another piece of this. Most rare conditions are genetic, as the doctor has pointed out. Genetic fairness is of course central to our discussion on rare diseases. Canada is the only G-8 country that does not have laws to protect its citizens against discrimination based on genetic information, and genetic discrimination impacts on two key areas of a person's life: insurability and employability.

Neurological Health Charities Canada supports Bill S-218, which was introduced in the Senate by Senator Cowan, and believes that this is a comprehensive bill that will provide the necessary protection for Canadians from discrimination based on genetic characteristics. We'd also like to recognize the championing that Libby Davies has done on this issue. We see the bill put forward by Senator Cowan as comprehensive, as I said, and as really covering off that employability and insurability piece.

In your report, “Focussing on the Brain: An Examination of Neurological Diseases in Canada”, this committee has also recommended that the Government of Canada consider using the results of the National Population Health Study of Neurological Conditions in collaboration with the provinces and territories, as the basis of a pan-Canadian strategy for neurological diseases.

The NHCC would like to see the government invest $3 million over the next three years into the NHCC to develop a framework for a pan-Canadian action plan for the brain that would focus on the key areas that we have put forward in the past, such as research, prevention, caregiver supports, and public awareness education, but also for us to be able to expand our base, to look at those priorities, and to reassess in terms of what the needs are of people with neurological conditions in Canada.

It should also be noted that the National Population Health Study of Neurological Conditions also includes a focus on certain rare neurological conditions and that NHCC expects to receive more information on the incidence, prevalence, and impact of these conditions. We believe that evidence will help to support the case for the solutions we've presented today.

[The Chair, Conservative, Joy Smith]

Thank you very much for your very insightful presentation. We appreciate it.

We'll now go into our round of questions. It's a seven-minute round and we'll begin with Ms. Davies.

[Libby Davies, NDP, Vancouver East, BC]

Thank you very much, Chairperson, and thank you to both of our witnesses for being here today.

First, Dr. Innes and Ms. Micallef, thank you for sharing information which I think gives us a very graphic example of how technological innovation can really help someone, such as the young woman you spoke about at the conference, because sometimes it's hard to go from the paper into the practical world and know how this stuff really works.

One of the questions I've had all along is based on the fact that we're hearing about some of these amazing advances in technological innovation. I do think it's an issue and you've touched upon it. I'd also ask Dr. Innes the same question. It's the issue of accessibility, and you spoke about that in terms of testing.

We heard from a witness last week, Durhane Wong-Rieger, president and chief executive officer of the Canadian Organization for Rare Disorders, who spoke from Geneva. She raised as well this issue about the lack of testing that's available for genetic diseases. It's sort of a patchwork across the country.

You say your organization is dealing with that and you're trying to navigate what's going on at the provincial level, what's available, what's covered. My question is, what can we do? We're a federal committee. We're speaking to the federal role in this. The more specific you are in terms of what you think the federal government could be doing would be helpful. I don't know whether it's through Orphanet, because Dr. Innes also touched on it, but what should we be calling on the federal government to do to make sure these innovations are actually accessible?

I don't know how much people have to pay for these innovations. You mentioned that the issue of what's covered and what isn't is a big consideration. How do we grapple with that? Under the Canada Health Act we talk about universality and portability. Sometimes even at the most basic level of getting service in another province you can run into difficulties, but here we're talking of sophisticated level of things that aren't available to people in even one province, depending on where they live. I wonder if you could address that.

Second, on genetic fairness, I do think this is a very key issue related to innovation when we talk about electronic health records, personalized medicine, and where information goes. Could you give us any concrete examples of what you were talking about when you talked about employment and insurability? Could you give us an idea of what some of your members have experienced when they faced discrimination?

[The Chair, Conservative, Joy Smith]

Ms. Micallef.

[Jacquie Micallef]

If I may, I'll start with the second question first, the one about genetic discrimination.

One of the most common examples of genetic discrimination would be Huntington's disease. If your parent has it, there's a 50-50 chance that you will too. Everyone has to fill out an insurance form where you are asked questions about any conditions that are in your family. Huntington's disease would be one that has a red flag attached to it.

Some people feel that if it's in their family they may be denied insurance, or they are pressured in some way, and we have seen this in employment situations as well, to get genetic testing. That's a very personal thing. If a person with Huntington's is found to have the gene, they know at some point during their life they are going to develop this devastating disease. That's a very personal thing. A lot of people don't want to do it. I think it's made people feel that because something is in their family, they're going to be discriminated against, or they are going to be put in a position to receive information that they perhaps are not able to deal with or process. The impact that could have on a family is really unfair. We know that these people are not protected currently.

There was a story of two sisters who wanted to open a physiotherapy clinic, I believe, but Huntington's was in their family and they were denied insurance. They were tested for the gene and they did not have the gene. They went back with this information and then they were accepted.

People shouldn't have to be put in a position of having to receive potentially devastating information like that, and to have to do it because of their livelihood or to fulfill any dream or aspiration that they have been working toward. I would give that as an example for genetic discrimination.

With respect to what the federal government can do, in terms of the technology piece, I think that's a really important question. Unfortunately, sitting here at this moment, I don't have the answer. As I said, I think a lot more investigation needs to be done as to what is being offered.

The other part of the issue is I tried to reach out to a couple of people who are involved in the communication devices piece to ask if they knew what was happening. I had a response from one clinician from the U.S. It's a little bit spotty when it comes to who holds that type of information, and I wasn't able to get it. It's something that NHCC is absolutely committed to looking into further, but I apologize that I don't have anything concrete.

[Libby Davies, NDP, Vancouver East, BC]

Even to say that we need an investigation is helpful. Somebody has to look at that. Can you guys do it alone? I don't know. But it is something we could recommend needs to be looked at. That's helpful in itself.

[The Chair, Conservative, Joy Smith]

We're very close to your time, Ms. Davies, so we'll go to Dr. Carrie.

[Colin Carrie, Conservative, Oshawa, ON]

Thank you, Madam Chair.

I want to take this opportunity, Ms. Micallef, to thank you and your colleagues for the input on neurological diseases. I think the study we did was a very encompassing one. Thank you very much for your input.

I want to ask you about one of technological innovations you brought up, this eye-gaze technology. I was wondering what other conditions it could be used for. How early can it be implemented?

[Jacquie Micallef]

Are you wondering when a person could begin to use it?

[Colin Carrie, Conservative, Oshawa, ON]

Yes, could a child?

[Jacquie Micallef]

The earliest example I've come across, which I included in the brief, is at three years. There isn't a vast amount of information out there on this technology at this point, but three years old was the earliest. There are other types of diseases, dystonia would be another example, where it could be used.

Of course, there are some conditions that it would not be used for. There are types of muscular dystrophy that affect the use of eyelids, and a person's eyes are not able to be open or be gazing in that way, so it would not be effective there. Especially with neurological conditions, some of them.... This is interesting, because it's starting from children. The interesting thing is that when someone develops a disease, an example could be Parkinson's or Alzheimer's, something they develop later in life, we already have an understanding of that person's likes and dislikes, their intellect level, all of that sort of thing. We already have that; that person's sense of autonomy has already been carved out. So when they develop a disease, a caregiver or health care provider, if they're taking the right amount of input and interest in the person, is able to continue care in that way. This eye-gaze technology, especially starting at three years of age, sets the person up to be able to start saying what their likes and dislikes are, and as I said, get that autonomy.

It's important that there be a lot more work done, a lot more studies out there about this information, and to be using it as early as possible.

[Colin Carrie, Conservative, Oshawa, ON]

I found it very exciting that people who you think are “brain-dead” is the term that's used, or something along those lines.... I've heard of it before, and I thank you for bringing that to our attention.

I want to ask Dr. Innes a question as well. You mentioned diagnosis as the first step in managing the condition, and you explained how Orphanet is an international portal supported by CIHR. I was wondering if you could elaborate a little bit. How does the technology, the innovative data collection and the way Orphanet works, help diagnose rare diseases? You talked about this diagnostic odyssey people go through. Perhaps you could tell me how we can start using this innovation of Orphanet, especially with rare diseases, because there's not a lot of information about them to make sure that we get a proper diagnosis.

Could you explain that?

[Dr. Allan Micheil Innes]

I would certainly view multiple layers or levels to the approach of a diagnosis with rare disease and acknowledge the fact that many physicians, even specialist physicians, will have limited knowledge of several rare diseases. Other physicians, such as myself, who practise in the area of medical genetics may have enhanced knowledge. I think Orphanet, which serves a number of roles, can be an early tool to help with diagnosis. A primary care physician or a family can search Orphanet, recognizing the symptoms that are present in the patient or their child, and can use that to try to guide toward a specific diagnosis. That can obviously help, because not every patient can see a geneticist. That can help set people on the right path. There is certainly searchable information there that can help direct to a specific diagnosis.

Now, many times formalizing that diagnosis may require a visit to a specialist and often confirmatory diagnostic tests, and that's a separate barrier. But we at least see Orphanet as a way to get people on the right track. As a clinician I have the experience of having met many people who are clearly alone, struggling with a lack of diagnosis. I get e-mails from people. I don't even know how they get my e-mail address, but I'm glad that they do. It predates my time in Orphanet. They just find me somehow. They're sitting in their living room somewhere, their child has something, and they've found me, provinces away, and they're asking for my help.

I think families are often isolated, and this is one more tool to help them.

[Colin Carrie, Conservative, Oshawa, ON]

Can you comment on the amount of information that is contained within Orphanet and how, in the last few years...? You mentioned Canada was the second country to sign on. How is it populated, and what kind of data collection do you have? What is the volume of data, just in the last few years, by using this technology?

[Dr. Allan Micheil Innes]

I'm sorry, but I don't have specific numbers or data points for you. I should clarify that Orphanet, although it had its origins in France, has been fairly ensconced throughout the EU for several years. Although we were the first partner outside Europe, many European countries have been inputting information.

The advantage to that for those of us in Canada who have to join is, among other things, to join Orphanet you have to have all the information available in your national languages. We're already well covered. Also you can imagine that information is there at least in many European languages, and now with Japan and Brazil and others coming on, other languages will be added.

There is a brief summary of essentially every rare disease. It's a moving target, but for the 3,000 to 7,000 known rare diseases, there are at least several paragraphs outlining the basic features of that disease. That's one. It's the encyclopedia of rare diseases. There are also databases for orphan drugs that are available, clinical trials that are going on, and access to registries.

For some of those things you didn't necessarily need Orphanet Canada per se. It's findable on the Internet. What Orphanet Canada has provided for Canadian physicians and Canadian patients is a list of where the clinics are in Canada that have expertise in these diseases, who the Canadian support groups are, the family support groups they can reach out to, what research projects are happening in Canada, and what registries you can participate in. That's the value added since we've joined.

We only launched in October 2012, so we've reached out through our offices to about 350 stakeholders. We're constantly trying to identify more. I think we have data on 70 of those live on our website so we have a long way to go, but we're gathering that information.

[The Chair, Conservative, Joy Smith]

Thank you.

Now we'll go to Dr. Fry, please.