Select Committee on Science and Technology Minutes of Evidence


Examination of Witnesses (Questions 320 - 340)

TUESDAY 25 JANUARY 2005

PROFESSOR CAROL BRAYNE, PROFESSOR CLIVE BALLARD AND MRS LINDA KELLY

  Q320  Baroness Walmsley: Yes.

  Professor Brayne: I am not aware of any reports other than the general scientific reports about the migration because we have a lot of able folk coming in as well as we are recruiting scientists at PhD level and so on. What I have seen since the demise of the regional research and development is the lack of the NHS R&D work at the regional level, so you could bring junior scientists on, both medical and non-medical, in the local area and make them ready to compete in the national setting and put them through the system that way. That worked extremely well in the regions. It is the same argument we have had recently about the stellar research departments, that you cannot have a five star department unless you also have three and four star ones, you have to have the different football teams in order to generate the very top level. We saw that in action with our regional funding because then you could take the best of that bunch and put them forward for the MRC funding or the highly competitive funding. Could I just comment on the policy issue? Although I said that many of the councils are saying the right things and putting out bids in the right areas, that is always responsive mode, so they put out a call and then there are tenders and then the quality of the work and the area of the work is totally dependent on the community that already exists, but it does not fill in the gaps. It may continue excellence in certain areas and make that better. If we want to spread out across the areas we will have to have another approach, not this constant tendering because we have it from the NHS, we have it from all the councils and we have it to some extent from the charities as well. I think the scientific community is constantly in a position of having to bid again and again and again often for the same thing which you know would be valuable if it was done. It is a waste of scientific time to keep bidding. It will be done in the end because somebody will fund it.

  Mrs Kelly: I would agree with Carol. I think that you have to have proactive as well as reactive calls for applications. I think the link from policy to research is actually quite weak at the moment from our perspective. There have been some quite nice examples in the last two or three years where they have got a group of scientists together and asked what they think are the key scientific questions and then they have looked at funding some of that work. If you do it this way you get better quality research.

  Q321  Baroness Walmsley: When you say they have got groups of scientists together, who do you mean?

  Mrs Kelly: We have done some of that. An example was with stem cell work, which is not quite ageing but perhaps relevant. Something like 4,000 articles were published in 2002 on what we could do. We put together a facilitator network and got everybody that we knew interested in the area to go and attend a conference and we asked them what they would like to do and then we tried to support the best idea there. The reasoning behind it is that you get people swapping ideas and you also get rid of things that are not viable, particularly in quickly emerging areas. We then got involved with the MRC and we asked the MRC if they would be interested in helping us do a conference and they did a stem cell conference. That does not negate the reactive applications at all, it has added to it and we do it in a rather modest way, but I think there is room for other groups to do that. It is very beneficial particularly in emerging areas where there is not that many scientists but people have come from a different angle.

  Lord Soulsby of Swaffham Prior: When we were in Washington we saw some very active young groups. There was one group that our adviser knows very well and it is an Englishman who is in charge of it. He comes over here and he knows where to go to convince the people to go and tells a sad story of low salaries here, the difficulty with housing and so on and so forth. So the best people are going there. They are full of excitement as to what they are doing. How many will come back? I do not know. It is stimulating to see them and sad to know that it is taking place. I think there are some centres in this country where there is an exchange scheme and Cambridge is one of them.

  Q322  Chairman: Happily, one of the young researchers I spoke to was coming to the Sanger Institute next month with similar excitement, wanting to see what is happening in this country.

  Professor Brayne: Maybe one of the constructive things is greater encouragement of this exchange, like the MIT programme that we have from Cambridge which does encourage that. We have had people coming through our Masters programmes who do a couple of years with us and a couple of years in the States, so they are very familiar with both environments and then they can work quite easily across the Atlantic. It is very stimulating for all of us to have that kind of exchange.

  Professor Ballard: Obviously one of the ways of trying to nurture promising younger scientists is through research fellowships and certainly the Alzheimer's Society supports those fellowships, as I am sure the Parkinson's Disease Society does and the research councils, but there are relatively few of them and particularly few in the area of neurodegeneration and so they become extremely competitive. Although it means that the people who are successful are usually extremely good quality, they are very limited in number and in terms of developing capacity that is probably not quite sufficient. Some of the initiatives, such as the ones that Carol mentioned at a regional level, used to be very helpful in supporting that kind of development, and that does not really exist any more.

  Q323  Chairman: Why does it not exist now?

  Professor Ballard: I am not sure. Carol might know the policy better than I do. I think what has happened more and more is a lot of funding has been given in slightly different ways, either to indirectly support trusts who are supporting research in other ways or as part of specific commissioning calls and I think those can be valuable in their own way, but there is a loss as part of that as well.

  Q324  Chairman: And this is NHS money for research?

  Professor Ballard: Yes.

  Mrs Kelly: I think the reason is that people development per se is a judgement and people are trying to focus on that.

  Chairman: We might have some witnesses from the NHS before us before too long.

  Q325  Baroness Walmsley: Neurodegenerative diseases are clearly seen as priorities by the NHS and, of course, the pharmaceutical industries. Do you think there is sufficient co-ordination of effort between the two? Is the focus more on the treatment of problems as they arise or is the emphasis on prevention? Is the focus more on the one than the other or is the balance about right?

  Mrs Kelly: I would slightly challenge the statement that they are seen as priorities by the NHS. I think if we really want to tackle it you have to take the person as a whole person. I think the silos of psychiatry and neurology are a very good example. In Parkinson's you can go to a neurologist, but if you had dementia you are meant to go to a psychiatrist and that seems to me not quite right. I would challenge whether they are a priority. I think the treatment of elements of neurodegenerative diseases are priorities but I think we need a whole person approach to it. I think the pharmaceutical industry has a wider remit and clearly might be able to comment even better than I can. They do early drug discovery and put products onto the market and I think that is really where they are. I am not sure the NHS and the pharmaceutical industry overlap that much in our area of expertise. With regard to prevention or treatment, if people could get the prevention of Parkinson's disease they would. I think if one could produce a vaccine that would be developed.

  Q326  Chairman: Where is the funding going then?

  Mrs Kelly: In the NHS?

  Q327  Chairman: And the pharmaceutical companies. Is it really on treatments or on prevention?

  Mrs Kelly: The biggest study we have done into Parkinson's disease is actually in surgery. Rather than leave it to the end stage, are you better to get it really early on and give people a better quality of life? It is a study costing about £10 million. It would be a very good use of money. In the pharmaceutical industry it tends to be cell death and ageing and general types of research like that and rarely in surgery, more in medication and different types of medication or existing medication and different uses.

  Professor Ballard: I think the pharmaceutical industry has a very specific remit, which is to develop products that have a marketable value and they can be successful in developing several treatments which have moderate but important clinical benefits in terms of symptoms for people with predominantly Alzheimer's disease that the same treatment might help. I think that has been important but there are huge, huge gaps. For example, earlier I mentioned vascular dementia. You would expect, because of the studies into strokes, that things like aspirin, treatment with hypertension drugs, would be effective, but those studies do not exist because there is not an economic priority to drive those studies forward and nobody is funding them either. So there is a huge gap in the market. All the companies have been very helpful in developing symptomatic treatments, but they have left big gaps and it needs a better strategy if you are going to cover the breadth of people. Most of the effort is currently going in to developing drugs which might modify the disease caused and therefore there are several studies in progress at the moment that are looking at treatment approaches. There are a number of methodological issues around how you measure that in a clinical trial that are also being wrestled with in parallel. I think the prevention studies have not really had the same emphasis. There are epidemiological studies and case control studies that have compared people who have developed dementia and who have not and who have looked at lifestyle facts and things, but the level of evidence is fairly weak from a lot of those studies because there are so many complex factors to consider that can bias the apparent findings. Carol knows this area an awful lot better than I do. There are only a handful of actual properly controlled trials that are investigating those kinds of issues, and really there is a much bigger need to invest in those kind of prevention trials, but they are long-term trials that are expensive to fund and certainly from a pharmaceutical company point of view they wouldn't be a worthwhile economic investment. So it has to be part of an overall strategy of developing treatments.

  Professor Brayne: The pharmaceutical companies by definition can only address real tertiary and secondary prevention, tertiary being when the disease is manifest and secondary being more related to screening. I think the pharmaceutical companies are paying a great deal of attention to the area which might be secondary prevention and they have given a lot of attention to this category which you may have heard called mild cognitive impairment. In the category mild cognitive impairment people have been shown to be at greater risk of developing dementia on follow up. However, for an individual it is not a terribly good predictor because, depending on the setting, between a third and a half might go on to develop dementia. However, if you put that against, say, hypertension, we do the same thing, we treat people who would not have gone on to have a stroke, but we treat the hypertension in order to treat the stroke. You need a very substantial amount of evidence to justify treating large sections of the population for a possible risk of conversion to dementia over time. Judging by the conferences, the pharmaceutical companies are really focusing in on this early stage dementia. The implications of that, where they have trial results, suggest that if they reduce that conversion to dementia even by a small percentage it would be really very substantial, because it would suggest that you could go out at the primary care level and identify individuals who might be at greater risk and start treatment, in which case you have a very large population to treat. I think we need to be very aware from the public health point of view that that is a very substantial cost on the horizon if there are positive trial results coming out. There are all sorts of issues to do with screening tests. I think the pharmaceutical industry is very focused on treatment, but they are pulling it into the normal range very much at the moment from my perspective and from our population distributions. If that were applied to the population then a huge section over the age of 80 and 85 plus would be eligible to receive such medication. On primary prevention, cigarette smoking is a good example of one which is probably a risk, it is almost certainly a risk factor for dementia and so the things that are going on at the moment in order to reduce exposure to cigarettes are likely to have a beneficial effect later on. Alcohol probably has an inverse relationship with a split projection and then a risk with it. There are things happening in the population which might tell us about prevention and the impact on the population later and this is perhaps where the White Paper on public health comes in. The area of public health and neurodegenerative disease could be economised by all the clinical research networks that Clive has mentioned because they are a little bit silo based, they come out through the cancers, diabetes and so on, but public health has common factors which run right across. Ageing fits in with that agenda really, ie what is the appropriate action that we should take in terms of research and care across these wide areas, because individuals will have diabetes and dementia and possibly cancer and so on, but the clinical research networks are in silos. So I think there is quite a concern there. The evidence on real prevention of dementia from trials has been quite disappointing. The HRT trial for dementia was stopped because it appeared that the people on HRT had a greater risk of cognitive impairment and there was a lot of debate as to why that might be. The trials for primary prevention of dementia have not really thrown up anything very positive. There is some promising work on physical exercise and cognition, but these are studies which are extremely difficult to do and they really do need stable support to be able to do them. I would hope that that is the sort of thing where, because physical activity is coming out as a general exponent for good health, we should be able to make that agenda up through the public health initiatives. I do not know exactly what is happening there, but I understand there is going to be a co-ordination of public health research to try to make it more strategic. You may know more than I do on that.

  Chairman: I suspect not.

  Q328  Baroness Hilton of Eggardon: Do you have a social class correlation in relation to dementia and lifestyle from the point of view of better nourishment, perhaps more exercise?

  Professor Brayne: It is very difficult to disentangle different effects. There does appear to be an education effect. There is a difficult issue there in relation to education or lifestyle and span of life. You might have a lower risk at a particular age, but whether or not you will die with dementia may be different because you live longer. There are two issues there.

  Baroness Hilton of Eggardon: It catches us in the end!

  Q329  Baroness Walmsley: We sometimes come up with bonus effects of things. You mentioned, for example, stopping smoking reduces pulmonary disease, but it has an effect in terms of dementia. There is quite a widespread prescribing of statins at the moment to keep cholesterol down, presumably to avoid vascular disease mainly. I heard that high cholesterol presupposes people to Alzheimer's as well. Could that be an unexpected benefit, this widespread prescribing of statins?

  Professor Ballard: It could be, but it needs to be evaluated much more carefully. I have seen about five epidemiological studies looking at statins. You might have seen more. Most of them seem to indicate some potential reduction of risk. However, I always get worried when the results are not consistent. If you look at the different studies, some of them suggest it is all people with dementia; some suggest it is people with just certain types of dementia; some suggest it is only certain statins or that it is all statins or all lipid lowering agents. When you have that degree of inconsistency, it makes you a little worried about what the studies are really showing. There are two studies published that were placebo control trials which appeared to show no reduction of risk, although those trials were not predominantly looking at cognitive outcomes and they were in younger people so the statistical power of the studies was limited. Nonetheless, they do not provide much support for the hypothesis. What is required is a proper study in a higher risk group of individuals with proper end points that are cognitive. Going back to what Carol said about the HRT story, one of the possible explanations for the HRT and the statins might be that people who are of higher levels of education will generally look after themselves better, have a better diet; they will be more likely to go to their GP. If they are more likely to go to their GP for statins, they are probably also more likely to go to their GP for treatment of blood pressure, so there could be quite a lot of non-specific factors which are leading to an apparent reduction of risk in those individuals, which is why I think it needs to be examined carefully.

  Q330  Lord Soulsby of Swaffham Prior: I have three questions which are all part of one another. The first one is crystal ball gazing. What do you perceive the opportunities are for research neurodegenerative diseases over the next five to 10 years in the short term and, in the longer term, over 10 to 25 years? What are the hopes and expectations?

  Professor Ballard: The Alzheimer's Society is similar to the Parkinson's Disease Society. We look at research in care, cure and cause. I do not want to neglect the care area because there is enormously important work that has been done and needs to be done. One of the priorities for me and for members of the Alzheimer's Society is to implement what we know about how to provide good quality care into practice. What happens at the moment is that isolated research studies show that if you provide care in a particular way it can dramatically improve people's quality of life or reduce the need for sedative drugs and other things. Yet, when you look around the country, that practice is almost never implemented. In terms of care there are some huge issues. In terms of more biological type work, in the last few years we have developed so much better understanding of the molecular biology of Alzheimer's disease and other dementias that it has created tremendous new opportunities. There are now a whole number of different strategies for trying to reduce the accumulation of amyloid protein in the brain, which is in the plaques in Alzheimer's disease. One of those is the Alzheimer vaccine which has been in the press quite a lot. There are a number of other approaches to tackling the same thing. There are also a number of approaches being developed to try and stop the development of tangles in nerve cells in Alzheimer's disease and again there are some agents in clinical trials at the moment. We heard mention of stem cells earlier. To me, one of the really exciting things in the last year or so is the fact that we all have these stem cells in our own adult brains and there is some evidence that they increase in response to stroke and to Alzheimer's disease. If we understood that process better, there might be possible opportunities to increase brain self-repair, for example. This is a personal view but in terms of the biological developments I would see the anti-amyloid approaches, particularly the vaccine and some of the approaches based on enhancing self-repair through stem cells as probably the most exciting things that are likely to lead to more substantive treatments in 10 years.

  Mrs Kelly: Genetics and genetic mutations translating into clinical benefits. Use of stem cells or not is very exciting. Environment factors and their role, even things like pesticides etc. Pragmatism. We have talked a lot about having exercise, stopping smoking and that sort of thing. I do not think you have to wait for research to try and get people doing that. I would like to reinforce Clive's point. There is some very good treatment around, and if 100 per cent got the very good treatment it would move up the quality of care quite significantly. That is not to negate the fact that there have been breakthroughs, but there is some stuff out there which, if we implemented it better, could help a lot of people. The other thing is gene therapy and translating that into clinical benefit. That would be our list.

  Professor Brayne: With the public health hat on and the epidemiology hat on, the exciting thing for us and the reason why I went into epidemiology was the ability to take the new biological findings and see what impact and meaning they had in the population setting, to take the likelies, the most exciting things and to test out the other areas of possible causation like pesticide exposure. Because of that background, I also have the caution which is that findings are likely to be less exciting. You put them in a setting and a context so it seems less exciting because you are immediately saying, "Yes, stem cells are exciting technology." When you think about it in relation to people with dementia who are aged 85-94, it may not be appropriate. We have to have a balance. Again, it comes back to the public health type of research, taking the novel science and trying to make it meaningful for populations and having a research base ready and waiting to translate that work. We have not had that research base ready and waiting to test things out and to translate the findings. I think it is possible to create that base possibly through the clinical research networks, by having proper, decent registers of patients, good information technology to be able to model what is going to happen in the populations in the immediate and the long term future, so that we can much more quickly move from good findings to meaning at the population level. At the moment it takes us many years. I do not think that is necessary. Epidemiology is an exciting population research to be able to translate those findings into meaningful results quickly.

  Q331  Lord Soulsby of Swaffham Prior: At the molecular biological level, what are the animal models you can use for these various conditions?

  Professor Ballard: There have been tremendous developments in that. Probably the most useful model that has been used to develop most of the drugs that are currently in clinical trials has been a so-called transgenic mouse model. These are various strains of mice that carry the genes that cause early onset familial Alzheimer's disease. As these mice get to about 12 or 18 months of age or even older if they can survive longer, they will start developing some of the pathologies. They are not perfect models of Alzheimer's disease because most of these mice will develop amyloid pathology which is the protein that develops in the plaques. They will not develop some of the other changes that happen in Alzheimer's disease. People are working on refining the models and trying to cross-breed different models but nevertheless, particularly as a lot of the drugs in current development are trying to target this particular protein amyloid, this does appear to be a very useful model for investigating those drugs. People have started in the last few years using fruit flies much more widely as well. For example, there was a very exciting study that came out last year looking at treatments to try and stop the development of tangles in nerve cells in fruit flies. Obviously, given the life length of fruit flies, it is much easier to do these studies over a quicker time period. I do not think that negates the need to then look at them in mammal models but it might give you an initial way of looking at it in a relatively cost-effective way before taking it on to the next stage of development.

  Q332  Lord Soulsby of Swaffham Prior: With respect to animal models, are there any naturally occurring animal models in the restricted genetic populations of dogs and cats and wild animals?

  Mrs Kelly: Not in Parkinson's disease. It does not occur except in humans. You are initiating it with chemicals which is why it is a limited model.

  Professor Ballard: I think the transgenic models are the best models at the moment. There are certainly some strains of mice that, as they get older, seem to lose nerve cells in certain parts of the brain that we can investigate, but they are probably not quite such good models for Alzheimer's disease as the transgenic models.

  Q333  Lord Soulsby of Swaffham Prior: You mentioned the complementary activity and social gerontology. How can one interact in a complementary way with the other sciences connected with ageing like gerontology for a better understanding of some of the dementias?

  Professor Ballard: It tends to take strategic development. We mentioned developing partnerships. On an ad hoc basis, the Alzheimer's Society has tried to do that as well. As scientists, I think we all try and develop partnerships but it is very much about people you have met, what you see and information you have seen. It just requires a much more cohesive approach to try to put together people with different major areas of expertise in order to set up a proper strategic agenda. It is mainly about communication between different people with different expertise before you can really see how you can best put those expertises together.

  Mrs Kelly: We have found it very difficult to do. Our only solution has been to get people together because it is so cross-disciplinary. You are trying to get people to look at a theme. Unless you physically get them in a room and say, "This is the subject for the day" we find we fail quite badly.

  Professor Brayne: There are two models which can work. One is the complex intervention model. Essentially, it is project or theme based. In our own academic department, the diabetes model has worked extremely well with physical activity in high risk individuals to prevent the onset of diabetes. In that team developing those complex interventions, which is MRC funded, they have social scientists of varying backgrounds including psychometricians, psychologists and more sociologically orientated folk to bring in that whole set of disciplines; and the epidemiologists and the triallists and the primary care physicians and academics. That has taken about five years to gestate and get to its current very strong format. The other model which can work well is something like the CFAS study. It is totally dependent on secure, stable funding over a period of time. It is a sufficiently large study that we have been able to develop themes within the work. It straddles across from the molecular end, the work done on blood or brains or whatever, right through to the policy end and legal aspects of brain donation, for example, sociological aspects of brain donation. We have been able to support a very wide range of studies because of the core theme of an ageing population in the research which has its own core focus. We can add on lots of different things as well and that has been very successful so we are bringing people together but it is around a study to collaborate.

  Baroness Walmsley: I wondered what was the potential for the big NHS online medical records project for your sort of population studies?

  Q334  Chairman: Assuming for the sake of argument that it works.

  Professor Brayne: It is enormous. If the data is collected accurately by the professional carers, specialists and practitioners at the ground level and entered correctly, it has the potential to transform the work that we do because we would spend so much less time trying to create the populations. In one study I did recently, it was very, very hard to recruit cases and controls of Alzheimer's disease because of the data protection laws and the whole mass of legislation. Working straight through the NHS to case registers where people have already been asked whether they are opting in, in a generic sort of way, to being approached about research would make a huge difference.

  Q335  Baroness Walmsley: How long do you think it will be before that happens?

  Professor Brayne: I do not know. It has been in the offing. People have been trying with IT in the NHS for some time. The technology is a lot better now but I should think, at the earliest, it must be about 10 years.

  Chairman: If you have any supplementary evidence or points to make on that, we would be very interested to receive them after the session.

  Q336  Lord Soulsby of Swaffham Prior: Do you think the research councils and other research funding organisations give appropriate recognition to the importance of ageing in general and to neurodegenerative diseases in particular? If not, what actions do you think should be taken or could be recommended?

  Mrs Kelly: No, I do not. One of the reasons is it is such a vast area. Perhaps it would be quite helpful to pick up on some key questions and try and move some key questions forward. Then, when we have success with that, get some more key questions. The benefits of that would be three fold. One, people could see something happening. Two, it gets exciting because you get expertise in the area. You do get people with a buzz. You get people wanting to move it forward. Also, you can get lots of stakeholders involved in that which I think again is very positive. One of the challenges of neurodegenerative disease in ageing is because it is so vast and it affects so many people. It is almost overwhelming. If you could narrow it down, it would help.

  Q337  Lord Soulsby of Swaffham Prior: One of the things about neurological research seems to me that it is quite long term and it is not like material where you can do your experiment in a day and a half. It takes weeks. I am familiar with the spongiform encephalopathy research and you have to wait hundreds of days until you know something. That must put a lot of people off.

  Mrs Kelly: I totally agree. I think it is not right. You could have a balance of some tangible outputs, even within three to five years. That would be perfectly reasonable and again would get a sense of energy. Once you get a sense of energy, it does make things happen. When you have people saying 10 or 20 years, it is a very long time away. That is not at all to negate big studies and properly controlled studies, but we should have specific ones for specific questions and try and get a little more energy into shorter term output studies that would benefit people. It would get some enthusiasm into it and get more people involved. It would attract funding and quality people. Research does have an element of fashion about it and therefore if you get things fashionable you attract people to you.

  Professor Ballard: I agree with all of that. Although you might have some longer term objectives to develop something which could be a cure or substantially change pathology, when you are looking at research studies you obviously have milestones along the way, each of which will lead to significant output. At the moment, there have been so many developments in the last few years, it is an incredibly exciting area. The difficulty is one of capacity. I do not think there has been sufficient funding allocated to it, but it depends what people want to achieve. There is a natural tendency for the number of researchers researching an area to adjust so that it is equivalent to the funding that is available. What is happening in the UK more and more is that there is a modest number of very high quality groups that are researching the area and those groups will carry on researching the area and producing some high quality output. If as a country we want to be in a position where we are making a more substantial difference to research in these areas, the funding needs to be much broader than that. We should not just be encouraging a small number of elite groups to continue to pursue their research. It is really a decision about how much we feel the UK should be contributing to this area as a whole and also the priority put on the question. When we were talking about some of the numbers earlier, 750,000 people with dementia in the UK, that is an awful lot of people. If you consider that alongside something like cancer, for example, which is also a very important question, the magnitude of funding available for cancer research is many fold above that available for dementia research.

  Q338  Chairman: Have you any figures that could illustrate that?

  Professor Ballard: Not off the top of my head. I can provide some supplementary evidence.

  Chairman: We would be very interested to see that.

  Q339  Baroness Walmsley: Do you think it is because the people with these diseases are less vocal than the people with cancer?

  Professor Ballard: I am sure that is true. It is one of the reasons why charities like the Alzheimer's Society and the Parkinson's Society have been very important. Certainly for Alzheimer's disease, it was not really until the late 1970s with the setting up of campaigning organisations that people had heard of Alzheimer's disease. It is not a new disease. It has been coming for a long time but nobody had heard of it until there was an organisation to campaign for it. Even now, because the people themselves often are not in a position to be vocal and therefore rely on other people to act on their behalf, they do not have the same kind of recognition and representation that other groups of people with serious illnesses have.

  Professor Brayne: Some people have commented that the age group predominantly affected has an impact on whether something is discussed at length.

  Mrs Kelly: There is another important thing that we should not forget. Truly, there has been a huge move forward in understanding of the brain, mapping of the genome and everything. Particularly over the last five or 10 years, things about brains have come up. Before, if you spoke to someone with Parkinson's, the future was very bleak, whereas now there is potential hope. That allows people to be more vocal. I think there is an age component but I also think there is an available opportunity component as well. From my perspective, it is a really important time to push it. There is opportunity out there and we might not want all of it in the UK but we should grasp some of it.

  Q340  Chairman: That is one of the possibilities for this Committee. We can make recommendations and ensure at least that those who should hear them do hear them. If you have further thoughts on this, we would be pleased to hear them.

  Professor Brayne: This comes back to the very first question you asked about: is it useful to split Alzheimer's, vascular and so on. Clearly, the labelling of Alzheimer's disease has allowed these charitable efforts to succeed. It is exponential compared to how it was in the early 1970s and 1980s. It is enormously successful but it is still dwarfed by the success of the cancer charities. In the States, they raise a lot of money. It probably is not equivalent to cancer but there is a lot more money for Alzheimer's research. The only problem about it is the need to keep enfranchised those individuals who receive other types of diagnosis, where people say, "I am not sure if it is Alzheimer's or something else", or the vascular dementia groups, who feel sometimes almost excluded from the debate about Alzheimer's disease.

  Professor Ballard: That is true. The Alzheimer's Society would recognise that as well. There has been a big campaign about vascular dementia that has recently started. It becomes a bit of a dilemma because, at one level, people now know what Alzheimer's disease is, so it is easy to talk about and people recognise it. I think it does lead to other people being neglected. If you look in the research literature, be that basic science or clinical trials, there is an incredible paucity of work looking at people with vascular dementia compared with those with Alzheimer's disease. Even within the Cinderella area of research, there is a Cinderella group within the Cinderella area.

  Chairman: May I thank the three of you very much indeed for giving us of your time and expert opinions. Can I re-emphasise my invitation? If there are any points that occur to you following this discussion where you could provide more specific information, please let us know. Our process is that we will begin drafting within a few weeks so, if there is anything that you want to draw to our attention, the sooner the better. Once again, thank you very much for a very helpful session.





 
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