Wednesday, 25 May 2016

Clinical trials from three different perspectives


This post coincides with International Clinical Trials Day which is celebrated each year around the world, on or around the 20 May to commemorate the day that James Lind started his famous trial. This week, across the Barts Health NHS Trust site a number of activities are taking place to educate, raising awareness and celebrate some of the brilliant research going on in our area. Our contribution to this shares the experience of taking part in a clinical trial either as a person with MS, an MS researcher and a MSologist.

----------------------------------------

The patient perspective:

"Like many people when first diagnosed with MS there is the inevitable "why me" but also a realisation of helplessness due to a lack of drugs to fight, slow down or even just simply delay PPMS. The only thing I could do was to lose some weight and keep myself fit and with that in mind I started immediately and continue now weekly physiotherapy sessions, but I was keen to do more. This lead me to look at drug trials to fight back - take the war to the enemy!

Since then I have been involved in 3 drugs trials over a number of years and given that I have few if any allergies, no needle fears (important believe me, given the number of times that you need to give blood!) and time on my hands I guess I am a reasonably good trials patient. In addition to this there is also an altruistic motive, I am keen to help develop drugs for all pwMS and also ensure that that those clever people developing drugs get the opportunity to trial them. In return I get regular health check ups and access to the medical staff at the Royal London, which I consider to be a plus factor and I also am now on very good terms with most of Prof G's team! Additionally you also have the opportunity to maybe get a drug ahead of the general population and test its efficacy.

There are of course occasions when you really do not want to spend time in a hospital and some trials have been a little more demanding than I would necessarily wish, but overall I would suggest to all pwMS to sign up for a trial if it convenient for them to do so - you never know what might come of it.”

----------------------------------------

The researchers perspective:

"I am Lucia and I work in the Lab to test the trial samples - this helps to determine if the trial drug is effective. I also take care of all associated paperwork, as everything in a trial needs to be documented: this is important for the participants’ safety as well as for the reliability of the results.

The vast majority of trials nowadays are testing a new drug against the best current one and not against a placebo: this eliminates the risk of going without treatment for the duration of the trial. To enrol in a trial the clinician must give you full knowledge of the possible risks and benefits; your agreement is given by signing an ‘Informed Consent’ form. Moreover, you can withdraw from a trial at any time without the need to give a reason.

To run a trial we have to adhere to national and international regulation and must have the approval of an independent ethical committee; Lab and documentation are also regularly inspected by regulatory bodies. As much as it is sometimes exhausting and frustrating for me to keep on top of all these piles of paperwork I feel all of this is essential to ensure the trial participants’ wellbeing is the first priority. It is also important to safeguard the scientific value of the trial - in other words, there must be strong scientific data to prove the drug is indeed effective.

What from outside might look like a lot of unnecessary red tape it is in my opinion a guarantee only really improved and beneficial treatments will reach the clinic. I enjoying working in clinical trials as the results of the analysis I perform on samples could lead to better therapies being available to people with MS."

----------------------------------------

The clinicians perspective:

"As a clinician, doing a neurological diagnosis is usually challenging but always rewarding. Unfortunately the lack of effective treatments for neurological patients could be a huge problem. Therefore, it is important to seek for innovative and more effective therapies to allow patients affected with neurological disorders to improve their lives on a day-to-day basis.

Clinical research, especially clinical trials, has taught me the importance of searching for new and more effective therapies for people suffering from devastating neurological disorders such as MS. Being part of clinical research projects is one of the most rewarding activities I have experienced in my medical career. As a clinical research fellow, I am involved in developing research objectives, projects and proposals, helping in the conduction of internal and collaborative research projects, and disseminating research findings through scientific publications and conferences. The objective of our clinical research is to find more effective therapies for people with multiple sclerosis.

Apart from the technical work we have to do, I always try to have some time to chat with people with MS and hear their necessities, this is priceless as patients have little time during the normal NHS appointments to talk about more general problems that are important during the time of designing research projects. Besides, some patients are opened to share some personal gifts they have, like Sam who shared with me poetry he writes in his blog:

“I try daily to always be happy, I know life is hard but it's best to go throw it with sum1 so lively…” Sam*

This is very gratifying!

----------------------------------------

You can find out more information about the different events taking part across Barts Health here. We are also working to update our trials tab on this blog.

PoliticalSpeak: Saving Good Sams

Save the Good Samaritan; help Barts-MS mobilise support. #MSBlog #PoliticalSpeak #GoodSams

"This is a post and a call for all the MSers who are under our care at the 'Royal London Hospital'. This post is blatantly political but it is relevant to the care of people with MS who attend the MS service at the Royal London Hospital. The Pub, or Public House, is quintessential English. The pub is not just a place to drink beer, wine, cider or even something a little bit stronger, it is a unique social centre, it is usually the focus of community life in villages, towns and cities throughout the length and breadth of the country."

"In our little patch, between our research Institute and the hospital, there is pub called the 'Good Samaritan' or 'Good Sams'. We love 'Good Sams' it is the one institution that makes our patch social. Closing it down would destroy 'social capital', which is worth so much more than 'capital'. We meet in 'Good Sams' to celebrate promotions, successful PhD vivas, the passing of exams, birthdays, births, etc. We chew the cud in Good Sams and many an MS research hypothesis has been born in Good Sams. 'Good Sams' is where our medical and dental student celebrate the completion of their end of year exams. In short 'Good Sams' is the heart and soul of Barts and The London Medical and Dental School and The Royal London Hospital."

"Good Sams was established in around 1785 and rebuilt in its present form in 1937. It is one of the last remaining pubs for those who live nearby; work for and visit The Royal London Hospital. Unfortunately, it is under threat of closure. I assume this relates to money. To the current owners: if this simply about making money this is a mistake. Please think about all the fond memories and nostalgic tears that are yet to me made and shed in 'Good Sams'. Life is so much more than pounds, pence, shekels and dimes. Whenever I enter Good Sams I feel happy and content; it enriches the quality of life of all of us her work on the Whitechapel campus and for those who come to be looked after and cared for at the Royal London Hospital. Some concerned locals have set-up a petition in an attempt to save 'Good Sams'. Barts-MS supports this petition and if you agree with us we would encourage you to support the campaign. This is not only about us, but about many an MSer who has stopped for a pint after clinic."


CoI: we work around the corner from Good Sams, chances are if you come to visit us we will treat you to a pint at 'Good Sams'."


Tuesday, 24 May 2016

Tracing your lesions through the MR Myelinoscope - news from the imaging department

Longitudinal Observation of Individual Multiple Sclerosis White Matter Lesions Using Quantitative Myelin Imaging
Kitzler HH, K√∂hler C, Wahl H, Eisele JC, Deoni SC; Rutt BK, Ziemssen T, Linn J. 
Poster # 1282, 24th annual meeting of ISMRM

One of you recently asked the question whether lesions on MRI can disappear, and I said yes they can, and that this has to do with several factors including lesion severity (lots of axonal loss or not), subsequent lesion repair, and the tools & techniques used to detect them (or not).  Now I just returned from Singapore after attending the International Society for Magnetic Resonance in Medicine (ISMRM), where I saw this work using an MRI technique optimised for detecting the myelin content in lesions (let's call it an "MR Myelinoscope").  It nicely shows that whilst lesions may look the same on our standard workhorse MRI, they may be quite in different "states" when looking through the MR Myelinoscope.

The panel above shows that over 12 months lesions on FLAIR (standard workhorse technique, top row) don't change very much, however the Myelinoscope (bottom row) shows dynamic change over time (see arrows): A lesion hardly visible at month 0 is largest at month 3 (demyelination), and then smaller (suggesting remyelination).



Panel showing 4 different lesion "states" (differences in myelination status over 12 months) using the MR Myelinoscope whilst standard FLAIR doesn't change.

Nice work indicating how crude our current standard MRI techniques are in monitoring the severity and dynamics of tissue changes within MS lesions.

Whilst the MR Myelinoscope technique is quite complex to implement, and therefore not available at many centres, it could be useful in trials of potentially remyelinating drugs where only a limited number of centres would be involved.

CoI: none

We're redefining our Mojo

Anyone for a Mojito cocktail? That was one recommendation. #MSBlog #MSResearch #Mojo



We’re back! Following one week of painful – albeit self-inflicted – soul searching we’ve now discussed the positioning of the blog. Thank you for all the feedback (positive and not-so positive) whilst the blog was suspended. We reviewed ALL of your comments, and felt very much encouraged to resume blogging. There are things we can improve, and below are some of our action points moving forward:

  • Posting Schedule: We drafted a posting schedule that will hopefully free up some time for the contributors. This is obviously not set in stone and won't stop us responding to current events, TV programmes, News articles in relation to MS as they come out.
  • New faces and guest posts: We will continue to invite researchers and clinicians to write guest posts, however will also offer the opportunity to people with MS, their family members, friends, and people involved in charity work. Please get in touch if you would like to contribute, however note this is a platform for MS research not for advertising.
  • Barts MS Charity: We will set up the ‘BartsMS Charity’ to support our research, maintaining the blog, and off-label prescribing initiatives, particularly in resource-poor health care environments. More information about this coming soon.
  • Better social media coverage: 
  • New ideas
    • Legibility: The blog home page will now show 5 posts at a time. What do you think? 
    • We plan to update the “Trials and Studies” section of the blog. 
    • We’re planning to extract all the clinical advice and information from previous and future posts to create an information resource that is easily searchable. 
    • Prof G promised to be more diligent with producing the case studies and hopes to get some back-room help. 
    • What about podcasting and vlogging? Do you think we need to go multimedia? 
As always, we are interested to hear your thoughts on the above and beyond. It seems as if a lot of you don't like the use of anonymous comments. It would be nice to know if many of you are repeat commentators; who knows you may take on Dr Dre at his/her own game! Can we suggest you take on a pseudonym if you don't want to let the world know who you are?

Photo credit: Dolly Clew

Tuesday, 17 May 2016

ThinkSpeak: Lost our Mojo-2?

Getting our mojo back: Barts-MS Blog #ThinkSpeak #MSResearch #MSBlog #LostMojo



Dear Readers

Thank you for your patience. Some of you are alarmed at the suspension and subsequent closure of the blog. Some of you may have read my post on 'Have we lost our Mojo' and the comments and discussion it generated. As a result of this we have decided to close the blog and reassess how it needs to evolve. Is it still needed? If yes, in what format. How to we control its content? We acknowledge that it is widely read and that some of our readers value our commentaries (thank you). However, with this comes extra responsibilities, which we need to reflect on. 

The following was our original mission statement:

"The aim of the Blog is for the Barts-MS to update you on the latest research in MS with an emphasis on the research we are involved in. A major reason for maintain the Blog is to thank the funders of our research. Funders encourage us to engage with the general public, people with MS and their families and other people with an interest in MS. We believe you have the right to know what we are spending your research money on! The purpose of our work is to improve our knowledge and understanding of MS with the goal of improving the lives of people living with this disease.

For us as a group of MS researchers the blog allows us to reflect on our work, assess its potential impact and plan for the future. For some of our research projects we need your help; this may be as a volunteer for a particular study or simply helping us to spread the word. A major benefit of the blog is that it encourages reflection and team work and provides us with an opportunity to celebrate our successes."

We will decide over the next few weeks if this mission statement is still relevant, have we stuck to our mission, have we strayed too far from it and whether or not it needs to be changed. While we considering all these issues you are welcome to comment.