It’s about working together - Robert McBurney, CEO
I’m delighted to welcome you to the new newsletter from Accelerated Cure Project for Multiple Sclerosis. We are very excited about all the great things that are happening to accelerate research efforts to improve the quality of life for people with MS, to cure the disease and, ultimately, prevent it.
At ACP for MS, we believe that research is the only way to greatly improve the outlook for people with MS and that open collaboration is the best way to speed up research and ensure that the important challenges are tackled.
Last week, we announced the formation of Orion Bionetworks, a new multi-institution cooperative alliance that brings rich datasets from different clinical and patient groups together with the capabilities of leading organizations that have expertise in data mining and disease modeling. Orion’s mission is to unlock the power of shared data to greatly improve our understanding of MS and related diseases and rapidly advance the search for better treatments and cures. The alliance’s research findings will be shared with the entire MS community. Click here to read the Orion Bionetworks Announcement.
Our involvement in the Orion alliance is a direct result of the remarkable effort that you have made either as MS clinic staff, as study participants, or as supporters of ACP for MS, to create our one-of-a-kind open-access Repository of biosamples and data. Read an update from Sara Loud on this tremendously valuable resource for the MS research community later in this newsletter.
A key form of open collaboration in MS research happens when people affected by MS share their needs with researchers. This type of communication isn’t as common as one might imagine, but can really focus the efforts of the researchers in areas that could lead directly to big improvements in treatment or breakthroughs towards a cure.
OPT-UP is a unique, nationwide, clinical research study designed in collaboration with MS clinicians and people affected by MS. The study’s goal is to develop the evidence base that will empower a transformation of clinical practice so that the optimal treatment can be prescribed for each individual person with MS. Perhaps the most important feature of the study design is that people with MS have been advising, and will continue to advise, the OPT-UP team on outcome measures that matter to them and on the best ways to ensure that patients are fully engaged in the study. Hollie Schmidt has written a brief description of OPT-UP that appears later in the newsletter. You will hear a lot more about OPT-UP during 2013. We are planning a number of events around the country during the next few months to introduce the MS community to OPT-UP and to gain the investment necessary to launch the clinical study before the end of the year.
Many thanks to all those who have supported ACP for MS in so many ways over the past year. Our efforts to generate research that can make a difference depend critically on your support. We have ambitious goals for 2013 – for OPT-UP, for MSDF, for the Orion Bionetworks alliance and for the ACP Repository. We plan to work together with you to achieve those goals.
ACP Repository - Sara Loud, Operations and Repository Director
“Alone we can do so little; together we can do so much.” – Helen Keller
In early 2006, Accelerated Cure Project for MS opened the ACP Repository and put out a call to action. To people diagnosed with MS, NMO, TM, ADEM, ON and their families we said: Join us in our efforts to accelerate research into curing MS and these related diseases by enrolling in the Repository.
3,185 of you answered the call.
Together, along with the staff at our 10 collection sites, we have created the ACP Repository – the only openly accessible collection of blood samples and data made readily available to researchers around the world studying the causes and mechanisms of MS and other demyelinating diseases.
Together we have provided more than 70 research teams, commercial and academic, from points near and far, with resources – valuable samples and data – to further their work and get steps closer to a quicker diagnosis, better treatments, and ultimately a cure. 23 of those researchers have already returned their research results to ACP for inclusion in the Repository database and further analysis – more than 300 million data points to date. Together we have made that possible.
Today we announce that we are closing the ACP Repository study to enrollment as we prepare for the launch of OPT-UP. Does that mean that our work together is done? Not in the least. We have a vast inventory of your samples and data and many, many more researcher teams, hundreds perhaps, will continue to access this rich resource to further their work. While we won’t be accepting new enrollments or asking you to return for a follow-up visit, the work continues to get these resources into the hands of researchers worldwide.
Thank you to all Repository participants and to the staff at each of our collection sites. We truly could not have built this valuable resource without you.
Multiple Sclerosis Discovery Forum - Hollie Schmidt, VP of Scientific Operations
The Multiple Sclerosis Discovery Forum is our web site that helps MS researchers stay informed and connect with each other across institutions and disciplines. Just under a year old, MSDF has already developed a rich and useful body of scientific writing about MS. Recent articles about new findings have explored how genes might influence where lesions crop up, and why regulatory T cells in people with MS have a tough time controlling their more inflammatory counterparts. In addition, MSDF includes background articles written to bring scientists in diverse fields up to speed on topics such as the blood-brain barrier and risk factors of MS.
Resources for scientists available on MSDF include meeting listings, a catalog of biosample banks, and a well-curated database of MS drugs in the development pipeline or already approved. And for those who are curious about the history and legacy of scientific investigation in MS, we’ve invited prominent scientists to nominate Classic Papers – journal articles that describe particularly important and influential advances in understanding and treating MS. Although the content on MSDF is directed toward researchers, everyone is welcome and encouraged to visit the site at http://www.msdiscovery.org. We thank our founding sponsor, EMD Serono, for supporting the development of this valuable resource.
OPT-UP - Hollie Schmidt, VP of Scientific Operations
We are in a new age of MS treatment, with more choices than ever before and the potential to keep disease activity at bay in some people for many years. But without knowing which drug is going to work the best for a particular patient, many people will continue to be on treatments that allow their disease activity to continue and/or produce harmful side effects. Another problem is that despite all the new drug approvals, we still don’t have any treatments proven to prevent disability in people with progressive MS.
Fortunately, through building our repository and forming relationships with top MS researchers around the country, ACP has developed expertise and assets that can be used to solve these important problems. In partnership with our network of repository sites, we are developing a study called OPT-UP (Optimizing Treatment – Understanding Progression) that will become ACP’s primary focus over the next several years. This study will be similar to the repository in that it will collect samples and lots of information from research participants; it will also follow participants for many years and it will place a special emphasis on “patient-reported outcomes” – information that only individuals with MS can provide, such as employment changes, fatigue levels, social activity, and drug side effects.
As samples and information are collected from the estimated 3,000 participants, they will be shared with research partners who will answer questions such as:
Are some MS drugs better than others at reducing disease activity and helping people continue doing the things they most want to do?
For any given individual with MS, which drug will provide the most benefit with the fewest adverse effects?
Can blood samples tell us what causes progressive MS, or do we need to look elsewhere for clues to stopping progression?
As we develop and launch this study, we will need support and feedback from the MS community. We will also be holding a series of events around the country to tell people about OPT-UP and generate support for the study. We hope to see many of you there!
For more information regarding OPT-UP, view the video below:
Cocktails for a Cure • Friday, April 12th • The W Hotel, Boston 8-11pm • Open Bar, Dancing, & Raffles!
11th Annual Scavenger Hunt to Cure MS: Best of Boston • Saturday, June 1st, 10am-6pm • Bell in Hand
Falmouth Road Race • Sunday, August 11th, 10:00am • Falmouth, Massachusetts
MS Global: Miles 4 MS • September 8-15th • Rocky Mountains, Montana
5th Annual Symposium & Recognition Dinner • Saturday, September 28th, 6:00pm • Sheraton Boston
For event information please contact Lindsey at email@example.com or 781-487-0013
For volunteer opportunities please contact Melissa at firstname.lastname@example.org or 781-487-0008
For more information regarding Accelerated Cure Project for MS visit our website at www.acceleratedcure.org
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The Accelerated Cure Project for MS is a non-profit, 501(c)(3) tax-exempt organization whose mission is to accelerate efforts toward a cure for multiple sclerosis by rapidly advancing research that determines its causes and mechanisms.