Alzheimer’s Society Research Grants Officer Kasia Kuleszewicz explains more about the TADPOLE challenge, an exciting new research project that is open to more than just traditional university-based researchers and aims to bring us closer to understanding how to prevent Alzheimer’s disease.
We have united with top international researchers to boost research into Alzheimer’s disease prevention. A key challenge of treating Alzheimer’s disease is that by the time it is diagnosed in the clinic, the changes in the brain may be too advanced to be reversed. Most clinical trials for Alzheimer’s disease carried out so far have targeted build ups of a particular protein known as amyloid. Sadly, results from these drug trials have been disappointing and an effective cure or treatment has not been found. This may partly be because treatment is started too late in the course of the disease to be effective.
Researchers are now developing a new method, called prevention trials, to identify people who are the most likely to develop the condition in the future, but do not yet have symptoms. One of the main challenges in designing these types of trials is that Alzheimer’s affects people in many different ways and it is very difficult to predict how the disease will progress for each person. Whilst some people might progress from having mild problems with their memory to Alzheimer’s very quickly, for others with memory problems they might decline more slowly or never go on to develop the disease. This can create difficulties for trials that are testing drugs designed to slow the rate of disease progression over 1-2 years; if people in the study naturally have a very slow course of progression then this may mask any real effect of the drug. Being able to understand more about how the condition is likely to progress in an individual person would significantly improve the design of future trials by helping to select the most appropriate people to enter trials. This will help ensure that the results gained are a genuine representation of how the drug works.
Making use of existing data
Alzheimer’s Society, the Alzheimer’s Association, Alzheimer’s Research UK and the European Progression of Neurological Disease (EuroPOND) Consortium have united with the Alzheimer’s Disease Neuroimaging Initiative (ADNI) to launch a new international competition called ‘The Alzheimer’s Disease Prediction of Longitudinal Evolution (TADPOLE)’ challenge. The ADNI study involves a large number of people at risk of Alzheimer’s disease who undergo a series of rigorous tests to track potential disease-related changes. These data include brain imaging, psychology, demographics and genetics. Contestants will use historical measurements collected during the ADNI study to create models that can help to predict how Alzheimer’s disease might progress over time. The entrants’ task will be to accurately predict who will develop signs of Alzheimer’s disease in the next five years.
Researchers have been building models to try and predict decline in individual people for many years and around the world there are many that have been developed, but these different models are rarely compared to each other. In TADPOLE, contestants will stand shoulder to shoulder with their counterparts to find out who can best predict the progression of Alzheimer’s disease in individual people over a period of five years. The competition is open to a diverse group of participants, from established researchers to citizen scientists and high school and university students.
The entrants must submit their predictive models by November 15 2017. However, the competition results will not be known straight away. Participants of ADNI study will be assessed throughout 2018 and their new data stored. Once the future measurements are available, these data are going to be used to determine whose model best followed the person’s progression. The models that gave the most accurate prediction will win a share of £30k.
These predictive models could significantly improve the way that people with Alzheimer’s disease receive treatment in the future. We will be able to see which of the measurements that are routinely taken in the clinic can be best used to understand Alzheimer’s disease progression. This will allow us to choose the most suitable drugs for individual people and will allow more powerful measurement of the potential effects of drugs in clinical trials. This has the potential to significantly speed up the search fora cure for Alzheimer’s disease.
I understand that the difficulty of finding a cure – or even a delaying mechanism – for Alzheimer’s may lead towards a new research focus on prevention. However, there are apparently a million of us in the UK with the disease already, and we would not be happy if the research focus moved away from attempts to slow or even reverse Alzheimer’s in current patients…! Well, I wouldn’t be, anyway…!
I agree with Martin, there are lots of us with mild memory problems that will develop and cause us to acquire dementia in the future. We need to be advised how to slow it down so we can benefit from any cures that may be developed in the future.
I agree with Martin,there are lots of us that have mild memory problems that will develope and cause us to acquire dementia in the future.we need to be advised how to slow it down so we can benefit from any cures that may be developed in the future.
Hi Victor – please see our reply below, there is still plenty of research going on looking at how to help people already living with the condition.
Kasla, I’m still puzzled by exactly what is being discussed here. Bearing in mind that patients like me and Victor may survive for a long time in increasing decline, and that there are many hundreds of thousands of confirmed Alz sufferers in the UK alone, it isn’t very cheery to hear that researchers might be giving up on attempts to delay, reduce or reverse our illness….
Or, on the other hand, is this Tadpole effort a relatively small additional angle on the whole thing?
Hi Martin – the TADPOLE challenge isn’t replacing research into slowing down or treating Alzheimer’s disease. There is still plenty of research going on looking at how to help people already living with the condition.
There are many ongoing studies and trials that are looking for people with mild memory problems or early-stage Alzheimer’s disease to take part, including clinical studies testing new drugs.
If you are interested in taking part in dementia research, the best thing to do is to register your interest with Join Dementia Research. You can sign up online at http://www.joindementiaresearch.nihr.ac.uk or call our helpline on 0300 222 11 22 and they will arrange for you to chat through the process with our specialised advisors.
Yes, I know about the research, I’ve contributed to several projects, and I will help with anything that will assist the struggle against this disease.
But this discussion has made me aware that I have no idea how funds are allocated in what must be a gigantic international effort. Huge decisions are being made that will affect many lives. Very large sums are being donated by people suffering from dementia, by families affected by the various diseases, and by millions of people with generous hearts.
I’m very glad about this, of course, and very thankful for everyone’s generosity! But I’m now wondering how these enormous sums are allocated, when all those involved (researchers, universities, drug companies etc etc) can probably make a very good case!
Does anyone have oversight of this enormous business? Is there a grand committee looking at everything? Or lots of committees? There must be a lot of tough choices – who makes them? And are patients or relatives involved at any stage?
Martin
Hi Martin, most funders allocate their available funds based on rigorous review of funding applications from researchers. In Alzheimer’s Society’s case, we ask for detailed feedback on funding applications from experts in the field and people with experience of dementia before making our decision on which projects receive funding.
You can read some examples on our website of the kind of projects we fund – https://www.alzheimers.org.uk/info/20053/research_projects. Our projects all include feedback from our Research Network, which is a team of over 280 carers, former carers and people living with dementia – there’s more about that here: https://www.alzheimers.org.uk/info/20063/patient_and_public_involvement/43/the_research_network
Your questions are really interesting, we are looking into writing a blog on this topic as I’m sure others would also like to learn more about how funding is allocated. As you say, it’s an enormous business.
As I previously commented people with ongoing memory loss feel isolated like myself and Martin. The ongoing signs are with us now and we cannot see any progress as our condition worsens. Mild drugs that may be available should be prescribed to people experiencing symptoms . We need action and involvement now not in ten or twenty years when the condition has overwhelmed us.
Ho hum… I feel that my comments have got this subject into a bit of a tangle, which is not unusual with me these days – apologies! I become irritated fa too easily by what appear to me to be self-satisfied and/or unclear descriptions of the activities of Alz Soc and other benevolent agencies… Alzheimer’s is a very, very wearisome thing, and makes me grumpy.
On another subject, I was interested to read that Alz may be generated by being on oxygen for a long time. That happened to me – I caught an infection after a lung cancer operation, and was hauled back from the edge of eternity by fabulous nursing and a lot of oxygen… Hopefully this discovery will generate new angles for the researchers.
I see that I’m writing this at 2.45 a.m. For some reason I find myself unwilling to go to bed… Get off your backside and go to bed, you stupid man, and stop this foolish typing!
Hi Martin, please don’t apologise for your comments, we really value your feedback! We are striving to be transparent about what we do at Alzheimer’s Society. We want to provide useful, clear information about what we spend our money on, and this blog is part of that. If you have any suggestions for what you’d like us to write about we’d love to hear them. You can also email us at [email protected].
Martin, I love it that you were typing highly relevant and personally-informed content at 2.45 am. I, too, become grumpy (wonderful understatement) at my self/cognitive state, although my changes are (I think) due to acquired brain changes from surgery and radiotherapy, which I have read from web content can be a contributing factor to dementia. I too get in tangles, especially when my emotions far outweigh my rational cogitations. We’re exercising our minds, they’ll just have to get over it….. And I’m totally with you on finding what is the most effective, efficient and lowest-waste allocation of resources. Thank you for voicing it so articulately.
Hello again. People have said positive things about my earlier remarks, and thanks very much for that.
I have just had a short but calming holiday. I got into my boat, sailed a few miles into a lovely river estuary and anchored there for four days with no company but gulls, pewits, geese and oyster catchers. Lovely.
Having been ill for the best part of three years with lung cancer, a post-operative infection that nearly killed me and now Alzheimers, I find myself feeling not at all guilty about such idleness.
In fact I did spend quite a lot of the time thinking about Alzheimer’s Disease, the Alzheimer’s Society, the million of us who (I’m told) have Alzheimer’s Disease in the UK, all those research projects that don’t get anywhere but employ a lot of people in universities, and what exactly is the best thing for the Alz Soc to do while we, the impatient patients, try to make the best of dying from the old Alz.
I was recently asked whether I would like to think about becoming a sort of ‘moderator’ on the Alz Soc site, perhaps trying to help people to find ways of coming to terms with the disease that we all have to live with. I spent a long time reading the discussions and trying to get a better idea of the horrible emotional tangles that us patients, our doctors and nurses and our families live with all the time – and in the end I didn’t see how I could help.
I can see that in some cases we wind each other up on the discussion boards, and that may make things worse, but who am I to say to another patient that they are doing it wrong? People must be free to say what they want to say, even if it isn’t particularly helpful.
Alzheimers definitely leaves us in a real dilemma. We are bound to feel all kinds of anger and rage at the injustice that has left us in this pickle, and we want to rant and scream about it. It’s only natural! But… Nobody’s to blame for Alzheimers! That’s the problem. Our anger has no particular target – it just sprays helplessly out in all directions like an unconrolled fire hose, and often it’s the patients’ family and doctors who cop the blame. Again, I wouldn’t tell anyone that they shouldn’t do that. It is very understandable indeed.
However, I have begun to wonder about all the time and effort spent by Alz Soc staff and patients on public discussions of very difficult personal situations. Is that the best way to use so much of the resources of the Alz Soc?
Of course I don’t know enough about what the Society does, but it does seem that the discussion forum is one of their central concerns. Is that true?
Alz Soc also does a lot to fund, encourage and assist research, as we all know. I suppose that must use up far more of its precious funds than the discussion forums do, which seems right and proper.
But one thing it doesn’t seem to do is to make a huge fuss about the size of the disaster that is hitting Alzheimer’s sufferers and our families. There are supposed to be a million people in the UK with Alzheimer’s. Is that true? I don’t know. But something that is going to kill anything like a million people – isn’t that a most enormous catastrophe? How many of us were killed in WW2? Was it as many as a million? I’m not sure. But WW2 didn’t keep going for ever, and it seems that Alzheimer’s is going to keep going for ever. Far more money needs to be spent on solving this problem! And it has surely to be spent by the government!
There is an ongoing row about the terrible Grenfell Tower fire, and rightly so. But I’d make a wild guess that at least as many Alzheimer’s sufferers died that week, and die every week of the year. Alzheimer’s is a huge tragedy in this country alone – and just think of the worldwide numbers, if it’s the same in most other countries!
Are we making enough fuss about Alzheimer’s Disease? Is the Alzheimer’s Society making enough fuss?
Or are we just being nice about it, and just dying quietly and politely with stiff upper lips, as we British are supposed to?
Why don’t we, the patients, hold marches and demonstrations? Occupy the Houses of Parliament? Speak out on peak-time media? Just dying quietly – isn’t that far too nice, far too well-behaved? Don’t we need something to inspire us with a bit more hope, and get a more urgent response from government? A million of us! Why, if you laid us end-to-end we would stretch from – er – well, that would be about 1000 miles, I think, and the length of the British Isles from north to south is about the same – so let’s say we’d stretch from Brighton to the Shetland Islands!
That is a lot of people.
I think there should be more fuss and more activity by us, and the Alzheimer’s Society can surely help us with that. As as we’re not actually dead, let’s make more of a fuss!
Martin Corrick