“Although not unanimous two-thirds of MSers would be prepared to self-monitor the impact of MS on their lives and would use a web-based tool or smart phone app for the this purpose. The challenge now is to get this initiative off the ground. Any ideas?”
“What will we, the healthcare providers, use the data that you generate for? (1) to look at the impact of MS on things that matter most to MSers; (2) to look at the impact of treatments on certain aspects of your life that were not captured in pivotal trials, e.g. relationships, employment, falls, fractures, quality of life, etc.; (3) to use the tool to do clinical trials using outcomes that are more meaningful to you as people with the disease; (4) to improve the interaction you have with your neurology team, the tool may improve the interaction you have with them so that when you see them valuable time is spent focusing on aspects of your MS that are problematic; (5) the data collected from such a tool could be used to demonstrate value for money to payers or commissioners regarding expensive interventions, e.g. fampridine. (6) Etc.”
If you build it, He will come,
This to me is just a distraction from what patients really want.Do a survey and ask what patients want – I bet you $1,000 that the following would come out on top: stop the disease, or repair the damage. Aps, crowd-sourcing etc etc are just jumping on the bandwagon. What I like from this blog is an update on what Team G is achieving – what research is underway, what progress is likely to be made in the next year, five year, ten years.Aggressive early treatment may offer a cure, but we won't know for 20 years! So what's the stategy for Team G (and other research groupd around the world)? I want less information / waffle and more facts abouts what's happening in the world of research (not he quality of care rubbish).As a former long distance runner, I envy Prof's G's charity raising work. I'd like to run again (I can walk, but not run) – is anyone doing anything to meet my hope?MS research (across the world) seems to be stick in a rut at the moment. Is it EBV, Vit D, gut bacteria that's the trigger? So many unanswered questions, and I don't get any feel for when they might be answered. "results need to be replicated", "further studies required"…. Does anyone relly want to rock the boat and come up with some real answers? Really not convinced that 2012 will be a momentous year for MS research!
Re: "Really not convinced that 2012 will be a momentous year for MS research!"This is the year that I anticipate Alemtuzumab getting through the pipeline; that will be momentous. Apart from BMT and cladribine – both off license treatments – alemtuzumab is the only DMT that offers some MSers the potential of a cure. As I have said before we won't know if it offers a cure for another 15 to 20 years. At least the wait has started.
Prof G,Sorry – I should always say upfront that I'm a great admirer of all you efforts. My post above is really a sign of my frustration. Alemtuzmab will be great news. I'd also like to see some hope regarding some recovery of lost function. The teams in Cambridge are just one of a large number of world class MS research centres around the world. What are others achieving? It seems a poor return (just one really effective treatment) given all the research / funding over the last 20 years!
Re: "Just one really effective treatment!"May that is all we need to change the paradigm?
Re: "May[be] that is all we need to change the paradigm?"Yeah, great new for those with RRMS, however, there is something called 'progressive MS'. Will Alemtuzumab work in that situation?This is my great worry: Alemtuzumab is licensed by the NHS and is delivers brilliant results – all those with RRMS are cured and live happily ever after, ahmen.The rest of us, maybe those with PPMS that never stood a chance of fighting off the disease, are left on the shelf. Granted, perhaps some ad-hoc drug that kind of marginally seems to slow down progression gets to the market, but that seems a long wait for minor hope.
Gents,Have you ever checked out the PatientsLikeMe website ? I've been using it for nearly 4 years to keep track of what's going on for me. It sounds to me like this is what you're suggesting. Don't re-invent the wheel unless you have to.
Re: "Have you ever checked out the PatientsLikeMe website ? I've been using it for nearly 4 years to keep track of what's going on for me. It sounds to me like this is what you're suggesting. Don't re-invent the wheel unless you have to."PatientsLikeMe is a great site but does not tick the necessary NHS boxes on e-health and is also a social networking site. What we need is something that is very secure and not for sharing. Not all MSers like PatientsLikeMe; some who have spoken out about CCSVI have been bullied and deleted their profile. Horses for Courses?