A follow on from my last blog post about Multiple Sclerosis.
Yesterday, I was reading this post on Martin Fenner's blog Gobbledygook and left a short comment containing a link to a comment I had posted last year at PLoS Clinical Trials.
My comment over at PLoS was directly in relation to Liz Wager's 2006 Manuscript entitled Publishing Clinical Trial Results: The Future Beckons
When I re-read my PLoS comment, I wanted to spin back to this section:-
A few months ago (27th April), the BBC aired a real eye opener in the form of This World documentary "Drug trials outsourced to India". This can easily be found searching for "this world drug trials India". Even more recently, it was the BBC (again) who highlighted serious concerns about a MS trial "Concern over major MS drug trial". This can easily be found searching for "concern over major MS drug trial". Despite all of these issues, no-one seems to be concerned, and more worryingly, willing to do anything about this !!
I was alluding to two particular BBC documentaries about clinical trials.
When I originally submitted my comment to PLoS back in 2006, it wasn't possible to embed links.
The links are Drug trials outsourced to India and Concern over major MS drug trial
I repeat what I said, "Despite all of these issues, no-one seems to be concerned, and more worryingly, willing to do anything about this !!"
Now, let's spin back to Martin's post above:-
"This required reporting of results has so far largely gone unnoticed in the medical community, but will dramatically change the way research involving patients is conducted and reported. The 12 month deadline will probably lead to earlier reporting of many trial results, and not publishing negative results will be much more difficult. The required reporting in a standardized format will also facilitate the meta-analysis of several similar trials."
Now specifically in terms of Multiple Sclerosis (MS), to demonstrate the importance of what Martin is talking about, let's focus on that BBC report Concern over major MS drug trial
When I initially read it, I was quite literally stunned. So much so that it directly led to me writing to PLoS about my views.
As the BBC report says:-
"It is feared patients currently taking expensive drugs like beta interferon may be kept in the dark even after the ten year study is complete."
It appears that due to Pharma pressure, after 10 years research at a cost of £500,000,000 to UK taxpayers, all of this ultimately led to nothing.
Since I know him, I contacted Sir Iain Chalmers who aired his concerns to the BBC. In response, he said, "There’s a very nasty smell coming from the whole business, Graham."
As Martin flags up in the comments section of his post, and as I was already aware since I participated, the WHO recently carried out a Public Consultation entitled Reporting of Findings of Clinical Trials.
As such, taking all of this into consideration, the MANDATORY registration of data acquired from clinical trials to be made open is a very large step in the right direction. Moreover, with all of the mandates now bounding around for public access to such data/knowledge it certainly looks like, at last, we're moving out of the dark ages. About time too.
Sunday, 3 August 2008
Sunday, 27 July 2008
BBC Scotland Investigates: 2008: Scotland's Hidden Epidemic: The Truth About Multiple Sclerosis
PRELUDE
A major donation from Harry Potter author JK Rowling will help combat Multiple Sclerosis (MS), a disease which affects one in 500 Scots. Funding for the £2.5m project will largely come from Multiple Sclerosis Society Scotland, which has been gifted a substantial sum from the author for this work.
Yesterday, my Mum mentioned a documentary on the BBC that she saw the other day that I missed.
Being a UK TV License Fee payer, I was able to watch it online here via the BBCi-player.
If you are able to access it, I urge you to watch this most compelling 30 minute programme.
Living life with multiple sclerosis by Elizabeth Quigley, BBC Scotland
Whilst I never met her, my Mum’s mum died at an early age due to MS. The documentary was therefore of particular interest to us and I would suspect, the ~ 10,500 MS patients in Scotland and beyond.
The documentary features an interview with author, JK Rowling. JKR apparently rarely speaks about the loss of her own mother at an early age (45) to MS but chose to do so here and also here.
Further reading:-
Research features in TV documentary
JK Rowling and the Multiple Sclerosis Society Scotland fund a new MS Research Centre
Sunday Herald article
Monday, 21 July 2008
Sunday, 20 July 2008
Lessig says money erodes trust in politics - Keynote from Austin
Mcdawg was one of around 650 online viewers of Lessig's most recent talk yesterday. The podcast has now been archived as above.
Certainly, up to Larry's well cemented standards delivery wise. I certainly found this pretty compelling and must watch it again later.
From one report in the blogosphere:-
We're listening to a very lively keynote by the distinguished Professor Lawrence Lessig, who is explaining how money in the political process has bankrupted Congress as an institution and reviewing the history of corruption, which goes all the way back to the beginning of the country.
"We face the exact same problem here," Lessig said, referring to the Framers' problems in making early American government independent (or nondependent) of private money and influence.
More under the fold.
Friday, 18 July 2008
Wright/Wrong - A Jurisdiction Issue or Broader Matter?
It's not everyday that your/the family GP is reported to governing bodies like the General Medical Council (GMC).
"The hearing continues."
BBC
No further comments from this family at this juncture.
Our family are very proud to be part of Dr Kerr's practice.
"The hearing continues."
BBC
No further comments from this family at this juncture.
Our family are very proud to be part of Dr Kerr's practice.
Sunday, 13 July 2008
Interview: "Open Views" featuring McDawg aka Steck
12th October 2007, Prof Peter Suber and I & were interviewed on the same afternoon, back to back by Sundar Raman as part of the ongoing series called "Open Views".
Peter's can be found here.
--
Having previously released a snippet and patiently waiting for a landing space over at KRUU.fm, I decided to edit and self archive a copy of my own.
Intended Intro music
White Lies by *Catch* by steck
Genre: Pop (mainstream)
Intended Outro music
Wake Up Now - remastered by Tobin Mueller by steck
Genre: Pop (mainstream)
Image, mash up of this image from KRUU.fm released under this CC license.
The interview was a joint creation of McDawg and host from KRUU.fm.
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 2.5 UK: Scotland License.
Saturday, 12 July 2008
Top 10 TEDTalks of all time
Really good montage of the 10 most popular TEDTalks.
Counting down the Top 10 TEDTalks
"With 50 million views since we debuted online two years ago, TED talks have become a powerful cultural force.
To celebrate this milestone, we're releasing a never-before-seen list: the Top 10 TED talks of all time, as of June 2008.
With speakers like neuroanatomist Jill Bolte Taylor and global health expert Hans Rosling, the list proves one of the compelling ideas behind TEDTalks: that an unknown speaker with a powerful idea can reach -- and move -- a global audience. Links to all 10 talks are found below -- or browse through our Top 10 TED Talks Theme. Even if you've seen all the talks, the highlights video is darn fun."
CLICK HERE FOR FULL DETAILS
H/T to Jane Park @ Creative Commons
Open source DJ mixer - 'Aurora'
aurora Open Source DJ Mixer\MIDI Hardware w/ Ableton Live from mcubed on Vimeo.
Looks and sounds well cool.
aurora is a usb powered multichannel mixer in a typical dj form factor. the device features two linear channel faders, a single a/b crossfader and eight backlit buttons. twenty four backlit knobs allow you to control effects. aurora, unlike most midi controllers, enhances performances with controllable ambient lighting. aurora easily integrates with your favorite midi compatible software.
Friday, 11 July 2008
Toll Access? Can't Share? - Get Creative - Legally
GET CREATIVE
In one of McDawg's official capacities as a Patient Advocate, he has two officially authorised routes for gaining free access to Toll Access STM (Science, Technology and Medicine) literature.
I've already blogged about one of them via McBlawg here.
The other resource that I have access to is in relation to a fairly specific area of protein misfolding diseases.
This is great for me (and the others who have access) but I'm fairly restricted by traditional Publishers Copyright as to sharing this literature with others who might be interested.
As one OA community member so ably put it to me when I was handed this particular "golden key":-
Thanks for this - indeed a victory. This is definitely not open access, though; anyone else who wanted access would be in exactly the same boat as you were before. There are more than 500 academic institutions, in North America alone. With open access, more grad students and potential researchers would have access; some might be interested, and decide to contribute to the advancement of knowledge in this area.
--
About two weeks ago, I spotted a new Manuscript of extremely significant interest and under "Fair Use", drew this to the attention of two contacts (McDawg has a lot). The one who responded remains an extremely reliable and sound contact at New Scientist.
From experience, this is simply water off a ducks back for McDawg but since I blog more regularly these days, I felt a blog post was in order.
Having closely followed research in a particular field of rare fatal neurodegenerative diseases for many years now, it's not every day when a new/novel form is discovered.
From the commentary Manuscript relating to the Manuscript in question:-
In this issue of Annals of Neurology, Gambetti and colleagues describe a new form of prion disease designated proteinase-sensitive prionopathy (PSPr). The discovery of any new form of disease is a milestone. The identification of this novel phenotype of prion disease reflects the value of a rigorous systematic surveillance program and underlines the importance of neuropathological examination and prion protein (PrP) typing in prion disease classification.
It was during a conversation with McDawg's father last night that McDawg was alerted to one of the growing number of media reports relating to this discovery. There are currently 15 including this one from the BBC. Several link back to either the abstract of the Manuscript and/or the article in the New Scientist which generated additional media interest.
From what I've read thus far, media coverage has been authoritative and accurate.
--
As regular readers (Aunty Philippa and Uncle David) of such ramblings are aware, McDawg is an active (albeit, lurking in the background) member of the Open Access Community. McDawg has demonstrated yet again that "Fair Use" is not a crime and I urge other Patient Advocates and those interested in free culture to share information with a degree of creativity etc. as we continue to navigate the semantic web world that we now live in.
If you are even the slightest bit interested in what the global community can do in terms of Open Access, drop by the Open Access Directory. It's a wiki so anyone interested can get involved as reported here from the onset.
In one of McDawg's official capacities as a Patient Advocate, he has two officially authorised routes for gaining free access to Toll Access STM (Science, Technology and Medicine) literature.
I've already blogged about one of them via McBlawg here.
The other resource that I have access to is in relation to a fairly specific area of protein misfolding diseases.
This is great for me (and the others who have access) but I'm fairly restricted by traditional Publishers Copyright as to sharing this literature with others who might be interested.
As one OA community member so ably put it to me when I was handed this particular "golden key":-
Thanks for this - indeed a victory. This is definitely not open access, though; anyone else who wanted access would be in exactly the same boat as you were before. There are more than 500 academic institutions, in North America alone. With open access, more grad students and potential researchers would have access; some might be interested, and decide to contribute to the advancement of knowledge in this area.
--
About two weeks ago, I spotted a new Manuscript of extremely significant interest and under "Fair Use", drew this to the attention of two contacts (McDawg has a lot). The one who responded remains an extremely reliable and sound contact at New Scientist.
From experience, this is simply water off a ducks back for McDawg but since I blog more regularly these days, I felt a blog post was in order.
Having closely followed research in a particular field of rare fatal neurodegenerative diseases for many years now, it's not every day when a new/novel form is discovered.
From the commentary Manuscript relating to the Manuscript in question:-
In this issue of Annals of Neurology, Gambetti and colleagues describe a new form of prion disease designated proteinase-sensitive prionopathy (PSPr). The discovery of any new form of disease is a milestone. The identification of this novel phenotype of prion disease reflects the value of a rigorous systematic surveillance program and underlines the importance of neuropathological examination and prion protein (PrP) typing in prion disease classification.
It was during a conversation with McDawg's father last night that McDawg was alerted to one of the growing number of media reports relating to this discovery. There are currently 15 including this one from the BBC. Several link back to either the abstract of the Manuscript and/or the article in the New Scientist which generated additional media interest.
From what I've read thus far, media coverage has been authoritative and accurate.
--
As regular readers (Aunty Philippa and Uncle David) of such ramblings are aware, McDawg is an active (albeit, lurking in the background) member of the Open Access Community. McDawg has demonstrated yet again that "Fair Use" is not a crime and I urge other Patient Advocates and those interested in free culture to share information with a degree of creativity etc. as we continue to navigate the semantic web world that we now live in.
If you are even the slightest bit interested in what the global community can do in terms of Open Access, drop by the Open Access Directory. It's a wiki so anyone interested can get involved as reported here from the onset.
Friday, 4 July 2008
Science Blogging 2008: London
Since I'm still a relative newcomer at the office I'm working in, other than my musical activities, my colleagues are unaware of some of my other outside of work spare time activities. Nothing new there then.
Having booked a day or two off to attend Science Blogging 2008: London, it wasn't long before folks enquired, "so, what are going to be doing when you're off?".
"I'm heading down to London for the weekend" McDawg replied.
"A Conference about science blogging".
That threw them big time.
Yesterday, I was asked "are you into Star Trek?". After I replied with "yes", this was greeted with a couple of sniggers. I'm not exactly "a Trekky" by any sense of the imagination.
2 + 2 = 10
McDawg then gets hit with "so you're off to a Star Trek Convention..."
Aye right.
"OK then, Google science blogging 2008" said McDawg.
After a few of them read this, they started to understand what I was talking about.
Some initial comments were interesting such as:-
"They're all PhD's"
"They're are old"
Both factually incorrect.
Next up was "what do you blog about?". "Various things: music, comedy, science, you name it". retorted McDawg.
We are a small team and clearly, I'm the only blogger. Nothing unusual about that.
--
After one person read this out loud:-
The science blogging community is growing rapidly and reaching larger audiences. At Science Blogging 2008, science bloggers from around the world will have the opportunity to meet and discuss the pressing issues in science, science communication, publishing and education. What can science bloggers do to maximise their impact? Can blogging contribute to scientific research and careers? How can blogs be used to help educate the public about science? Readers and writers of science blogs, those who follow trends in online scientific communication and anyone else interested in learning more about science blogging will benefit from the discussions.
they and those listening started to appreciate the purpose of the Conference and why us attendees were, er, attending.
--
Science is not just about scientists - its about many things. Blogging is about many things. The dual combination is still a relatively new concept but one that is rapidly gathering in pace the world over.
During today's discussion, once the concept was grasped that McDawg is a blogger, someone interested in science and attending a Conference about these subjects, thank feck, the penny had dropped.
Better still, once I explained that I already knew, via the blogosphere, many of the speakers and others attending and was equally looking forward to the social events, it was swiftly back to work to all concerned in this interesting on and offline discussion.
I rest my case.
Having booked a day or two off to attend Science Blogging 2008: London, it wasn't long before folks enquired, "so, what are going to be doing when you're off?".
"I'm heading down to London for the weekend" McDawg replied.
"A Conference about science blogging".
That threw them big time.
Yesterday, I was asked "are you into Star Trek?". After I replied with "yes", this was greeted with a couple of sniggers. I'm not exactly "a Trekky" by any sense of the imagination.
2 + 2 = 10
McDawg then gets hit with "so you're off to a Star Trek Convention..."
Aye right.
"OK then, Google science blogging 2008" said McDawg.
After a few of them read this, they started to understand what I was talking about.
Some initial comments were interesting such as:-
"They're all PhD's"
"They're are old"
Both factually incorrect.
Next up was "what do you blog about?". "Various things: music, comedy, science, you name it". retorted McDawg.
We are a small team and clearly, I'm the only blogger. Nothing unusual about that.
--
After one person read this out loud:-
The science blogging community is growing rapidly and reaching larger audiences. At Science Blogging 2008, science bloggers from around the world will have the opportunity to meet and discuss the pressing issues in science, science communication, publishing and education. What can science bloggers do to maximise their impact? Can blogging contribute to scientific research and careers? How can blogs be used to help educate the public about science? Readers and writers of science blogs, those who follow trends in online scientific communication and anyone else interested in learning more about science blogging will benefit from the discussions.
they and those listening started to appreciate the purpose of the Conference and why us attendees were, er, attending.
--
Science is not just about scientists - its about many things. Blogging is about many things. The dual combination is still a relatively new concept but one that is rapidly gathering in pace the world over.
During today's discussion, once the concept was grasped that McDawg is a blogger, someone interested in science and attending a Conference about these subjects, thank feck, the penny had dropped.
Better still, once I explained that I already knew, via the blogosphere, many of the speakers and others attending and was equally looking forward to the social events, it was swiftly back to work to all concerned in this interesting on and offline discussion.
I rest my case.
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