Why is it that this sort of research does not appear to be happening with any rigor in this country?

[Chimbelina]

Go to:

newscientist.com/article/dn...

Does anyone know of sources of funding for the medical development of the technology using Apps, sport wristbands and smart phones? Please share this question with everyone you know on facebook and twitter? Such technology would give help people to manage the condition of those suffering epilepsy, improve their independence and safety.

We need this technology to be available at an affordable cost, preferably on the NHS!

[AmyBadd]

Well I do not know the answer to this question in particular, but what I can tell you is that I work in medical research and to do anything you need to get funding via grants. These are not particularly easy to come by, and before you can even apply, you need to have a solid group of people dedicated to the research and a clear plan of what it is you will do once you get the money.

In terms of where the money would come from, I think most of the main funding bodies for other kinds of medical research would fund this if they believed that it would have enough of an impact, but it's convincing them of that that is the problem.

[Chimbelina]

Thanks Amy.

You would think SUDEP would be considered enough of a problem, not to mention accidental falls etc. that can occur through seizures. I lost my niece to SUDEP a year ago and have a son in a high risk group for this.

Also for personal independence and general peace of mind: for example, young people going off to university.

We have organisations such as Young Epilepsy and The Meath Centre with a residential facilities and so plenty of opportunity for this non invasive technology to be tested in a safe environment.

[Hidden]

Yes, I think Amy has the correct answer. Research is of utmost importance and I suppose this would only be done and be prevalent in Groups of people. Here in South Africa, funding would be extremely difficult, so basically patients go without.

[EpilepsyInst Partner Epilepsy Research UK]

The precise causes of SUDEP are still under investigation, and once they are understood, more effective means of SUDEP prevention will hopefully be developed. As Amy quite rightly pointed out, evidence for the potential effectiveness of seizure alarms on a broad scale is needed in order to attract funding, and often other areas of this vast condition appear to be more promising to funders. There is some research going on in the UK, but it can take years for there to be any tangible clinical intervention to be developed. University College London is in the process of developing an apnoea alarm that sounds if the person stops breathing. This will hopefully be available for use in the near future.

One thing that is reassuring is that the researchers around the world who are investigating SUDEP know each other well, and so any evidence for SUDEP prevention will not take long to reach the UK. Also, there there are a number of organisations that are trying to make people more aware about SUDEP, which is a very important part of the mission to tackle it.

[Chimbelina]

Thanks for the responses.

It seems to me that in tackling SUDEP, a crucial factor is that often the people who die are alone at the time. Therefore in tackling it, one precaution would be for help to be summoned and the most convenient and least obtrusive way for this to happen is by a wrist sensor with alarm and mobile phone technology.

My son's neurologist has told me that in the post-ictal phase I should actively try to rouse him to full consciousness rather than passively wait as it takes my son about an hour to be fully able to respond and talk any sense and then he sleeps for most of the day with bad headaches for several days afterwards and slow recovery. It is not necessarily Status Epilepticus that causes SUDEP, which in some cases occurs in the post-ictal phase.

It would also be useful if data on myoclonic seizures while sleeping could be collected, in the same way as sleep apps work (but more scientifically!) as this could warn of progression towards a full Tonic/Clonic or the need to discuss an increase in medication with the doctor to get these under control. People that live alone would be unaware if they were having myoclonic activity while sleeping.

I just thought I would raise these points on the off chance that they may filter through along the grapevine to those people who are in a position to undertake such research. I know a technology wizard but as you say it needs sound medical expertise or possibly university funding from a technology university coupled with a university hospital.