The Multiple Sclerosis Resource Centre
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- Group created: March 2009
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- Multiple Sclerosis, MS, MSRC
- Me, Myself, and I
- The Multiple Sclerosis Resource Centre (MSRC) is a proactive and innovative charity, passionately committed to supporting anyone affected by Multiple Sclerosis through access to unbiased information and advice. Our approach is to encourage individuals to make choices that are appropriate to their daily lives, empowering them to maximise their potential.
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Fifty percent of MS patients avoid treatment over injectable delivery fears
Around half of all multiple sclerosis (MS) patients that are eligible for treatment do not receive it and one in five of those patients that do begin therapy, delay doing so because of fear and anxiety over the treatment process, and not fear and anxiety about the disease.
These observations are according to Patricia Kennedy, a nurse practitioner and consultant at Can Do Multiple Sclerosis, formerly The Heuga Center for MS, US, who presented at the 2nd Vetter Drug Management Leadership Conference in Germany.
“If the injectable therapies that we have available today are good for MS, good for patients, and good for the future, why aren’t patients taking them?” questioned Kennedy. “It is important for industry to be aware of MS patients’ reasons for avoiding treatment and what they go through when facing the disease,” she added. She then urged delivery-device manufacturers to consider patient behaviour and feelings when developing new devices in order to increase a patient’s chances of initiating therapy and complying with long-term treatment.
According to Kennedy, healthcare professionals face a number of challenges when dealing with MS patients, with those who are eligible for therapy opting out of treatment for a number of reasons, including: lack of belief that it is needed; fear of needles; the constant reminder of the disease each time they need to inject; lack of family support; and the financial burden of treatment.
“Even in those patients that do begin treatment, it’s another challenge to keep them on it,” admitted Kennedy. She also advised of the problems that US healthcare systems currently face with disposal of syringes and sharp objects; this is a particular problem in more populated regions in the US.
Education of patients and their support networks is incredibly important to help with patient compliance and disease management. However, Kennedy also provided advice to industry on how new device development might help MS patients to manage and control their disease since injection-related issues are still a primary cause for patient’s fear of starting therapy and is the main reason for lack of compliance.
What can industry do?
“The easier we can make it for a patient to administer treatment, the more likely it is that the medication is going to be used,” explained Kennedy. “In most cases, the smaller the needle, the better. Although a 29-gauge needle might be easier to use than a 30-gauge needle, and although both are small, the patient will opt for the slimmer 30-gauge every time. Psychologically, that’s what they want,” she added.
According to Kennedy, patients want titrated, prefilled syringes that are marked clearly. Not only does this avoid any issues of efficient mixing and incorrect dosing, but MS patients often have vision problems. Kennedy also emphasized the importance of travel devices, such as pens. “Patients want devices that are easy to travel with because we live in a mobile society, and if we provide the option of transporting less bulky injections devices whilst they’re away from home, patients are more likely to comply with their medication,” she advised.
In general, Kennedy also believes that injection devices could help patients immensely. “Most patients like injectors; even if the needle is a 30-gauge needle, patient’s don’t want to see it. So if you can hide the injector, then that’s good. It’s psychological,” she said. Injection devices not only help overcome the psychological barrier to injections, but they are also easier to use than syringes, which is especially beneficial for those patients that suffer from tremors. In addition, they help patients to obtain a consistent depth of injection and thus reduce the number of injection-related side effects.
“I also believe that needless devices would help improve patient compliance with drug therapy,” added Kenney.
The bottom-line for patients, according to Kenned0 Comments 1 day
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Drug studied as possible treatment for spinal injuries might also treat Multiple Sclerosis
Researchers have shown how an experimental drug might restore the function of nerves damaged in spinal cord injuries by preventing short circuits caused when tiny "potassium channels" in the fibers are exposed.
The chemical compound also might be developed as a treatment for multiple sclerosis.
Because nerves usually are not severed in a common type of spinal cord trauma, called "compression" injuries, the drug offers hope as a possible treatment, said Riyi Shi, a professor in Purdue University's Department of Basic Medical Sciences, School of Veterinary Medicine, Center for Paralysis Research and Weldon School of Biomedical Engineering.
"Compression is responsible for most spinal cord injuries, including many resulting in paralysis," Shi said. "Since the nerves are not severed, this type of drug represents a potential golden opportunity to treat spinal cord injuries."
The experimental compound, 4-aminopyridine-3-methyl hydroxide, has been shown to restore function to damaged axons, slender fibers that extend from nerve cells and transmit electrical impulses in the spinal cord.
Findings, based on experiments with guinea pig spinal cord tissue, appeared online in the Journal of Neurophysiology. The work was led by Department of Basic Medical Sciences doctoral student Wenjing Sun.
Shi said the findings were made possible by the interdisciplinary nature of the work, which also involves researchers Richard Borgens, director of Purdue's Center for Paralysis Research and the Mari Hulman George Professor of Neurology in the School of Veterinary Medicine; Stephen Byrn, the Charles B. Jordan Professor of Medicinal Chemistry, and Daniel Smith, a research assistant professor, both in the Department of Industrial and Physical Pharmacy; and Ji-Xin Cheng, an associate professor in the Weldon School of Biomedical Engineering and Department of Chemistry.
Researchers have shown how an experimental drug might restore the function of nerves damaged in spinal cord injuries by preventing short circuits caused when tiny "potassium channels" in the fibers are exposed by trauma. The compound also might be developed as a treatment for multiple sclerosis. This diagram illustrates how the drug functions as a "channel blocker," meaning it permits the conduction of signals even though the protective myelin insulation has been damaged.
(Photo Credit: Purdue University, Department of Basic Medical Sciences)
The researchers subjected spinal cord tissue to stresses that mimic what happens in a compression injury, which stretches nerves. Then they treated the damaged axons with 4-aminopyridine-3-methyl hydroxide.
The compound is a derivative of the drug 4-aminopyridine, used primarily as a research tool and also to manage symptoms of multiple sclerosis.
The axons of each nerve are sheathed in a thick insulating lipid layer, called myelin, which enables the transmission of signals without short circuiting, much like the insulation surrounding electrical wires. Spinal cord trauma damages the myelin sheath, exposing "fast potassium channels" that are embedded in the axons and are critical for transmitting nerve impulses.
The researchers confirmed previous circumstantial evidence suggesting injury causes the myelin insulation to recede, exposing the channels and impairing signal transmission. Laboratory and imaging techniques revealed the exposed channels in damaged axons.
The researchers also discovered that 4-aminopyridine-3-methyl hydroxide is a "potassium channel blocker," using a sophistic laboratory technique called "patch clamp" to measure signal conduction. Findings confirmed that the compound prevents the exposed channels from leaking electrical current and enhances nerve conduction in segments of the damaged spinal cord.
The compound could make it possible to sidestep spinal cord damage by enabling axons to transmit signals as though they were still sheathed in myelin, Shi said.
Nerves transmit signals throu0 Comments 1 day
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Three more PML cases and one more death confirmed for Multiple Sclerosis drug Tysabri
It was confirmed yesterday, 18/11/09, by a Biogen Idec spokesperson that there had been a further 3 reported cases of progressive multifocal encephalopathy (PML) in patients taking the multiple sclerosis drug Tysabri. It was also confirmed that one further patient has died of the serious brain infection.
To date 63,000 patients have taken Tysabri since it was returned to the market in July 2006, of which 27 have developed PML and 5 of these have died. Based on these evolving figures, the FDA updated the Tysabri prescribing information earlier this month to say that the risk appears to increase as patients stay on the drug for longer periods of time.
Questions are being asked as to what is happening to those patients who get PML, but survive. Biogen confirmed that it isn’t releasing a patient-by-patient breakdown of what is happening to the survivors, but its medical affairs staff is answering those questions from doctors.
It is reported by Biogen that some of the patients are severely disabled, but a few of the 27 cases have recovered and some have even return to work.
Commenting on this latest report, Helen Yates, Multiple Sclerosis Resource Centre Chief Executive said, “It is always distressing and worrying to hear of further cases of PML in patients that have been receiving Tysabri. It is even more of a concern to hear that one of the patients has died as a result of PML when the monitoring process is supposed to alert the medical professionals to the possibility of PML much earlier than previously.
We keep being told that PML is becoming more treatable and yet Biogen are not releasing information clearly to the people who are considering this treatment thus leaving them unsure as to the genuine risk they are facing. Tysabri is, without doubt, proving extremely effective for many people but nevertheless patients should be provided with all relevant information when weighing up the risk against efficacy of this drug”
Source: MSRC & Xconomy Boston © 2007-2009, Xconomy, Inc (19/11/09)
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Multiple Sclerosis in Children
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The Multiple Sclerosis Resource Centre
A major new article on Multiple Sclerosis in Children has been published by the The Hospital for Sick Children, Toronto, Ontario Canada0 Replys 36 weeks
You can read the complete article at MSRC: About MS : Paediatric Multiple Sclerosis - http://www.msrc.co.uk/index.cfm?fuse... -
Genetics studies provide new clues to why people develop MS
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The Multiple Sclerosis Resource Centre
New studies are deciphering the complex picture of genetic characteristics that make people susceptible to MS, thanks to international collaborations and unique population studies. Each gives important new clues about why people get MS. Additional large-scale studies, the first stages of which are already underway, promise to uncover the great majority of genes that convey risk for MS, which would pave the way for understanding the basic cause of MS and developing more rational therapies.0 Replys 37 weeks
CD58 Gene: When it completed the largest replicated whole genome scan (scan of all the genes in the body) for MS to date, the International MS Genetics Consortium (IMSGC) identified and validated variations in two genes that help regulate the immune system as clearly increasing genetic susceptibility to MS, and preliminarily identified several other genes of newly suspected importance in MS. Philip De Jager, MD, PhD (Brigham & Women's Hospital, Boston) and colleagues in the IMSGC now report on one of these other genes, CD58, which instructs the activation of T cells, major players in the immune attack on the brain and spinal cord in MS. They studied this gene in 1530 additional people with MS, and found further evidence of its association with the disease. They pinpointed a specific marker, or segment of DNA, on the gene that is associated with reduced susceptibility to MS. They also showed that the level of CD58 expression (that is, the amount of CD58 protein that is produced from the CD58 gene) is associated with remissions from MS disease activity. Manipulating CD58 is a strategy used in treat other autoimmune diseases, so this study may open up new therapeutic options for people with MS. (Proceedings of the National Academy of Sciences U S A 2009 Feb 23)........................
For the full report please go to MSRC: MS Research News : MS and Genetics Research - http://www.msrc.co.uk/index.cfm?fuse...
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Report reveals the importance of studying Multiple Sclerosis in children
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The Multiple Sclerosis Resource Centre
An article published in the Spring 2009 edition of Multiple Sclerosis Quarterly Report, a joint publication of United Spinal Association and the North American Research Committee on Multiple Sclerosis (NARCOMS), reveals the importance of understanding the biological onset of Multiple Sclerosis in children as it can also lead to a greater understanding and treatment of MS in adults.0 Replys 37 weeks
The article by Jean Marie B. Ahorro, MD and Brenda L. Banwell, MD of The Hospital for Sick Children in Toronto, Ontario Canada, highlights some of the latest information on paediatric MS, including risk factors, diagnosis, symptoms, and treatment strategies.
Presently, most care models for paediatric MS are based on protocols optimized in adults and pivotal studies of MS therapies are restricted to patients over 18 years of age. Conducting randomized control trials of paediatric MS has also been challenged by the rarity of the disease in children......................
For the full report please go to MSRC: MS Research News : Paediatric Multiple Sclerosis Research - http://www.msrc.co.uk/index.cfm?fuse...
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Charity Of The Year Competition
The Multiple Sclerosis Resource Centre 0 ReplysMSRC has been invited to participate in the Charity of the Year Competition on http://www.optimistworld.com/ which if we are successful could bring in a very welcome cash donation.
To ensure that we move on into the second round of the competition, please g...
MaximuS Bear is MSRC's mascot and now you can own your very own MaximuS! To find out more go to MaximuS's page - http://www.securio.net/msrc/index.cf...
The Multiple Sclerosis Resource Centre 0 ReplysShow your support for MSRC by wearing one of our MaximuS Bear mascot or MSRC lapel badges. To find out more go to the MSRC Lape...
Well done to every one of the 130 Higgy's Heroes who ran the Stroud Half Marathon on Sunday 25th October!
The Multiple Sclerosis Resource Centre 0 ReplysFull details of the day - http://www.msrc.co.uk/index.cfm?fuse...