2018 Review and Looking Forward
Your enthusiasm and participation made 2018 a very exciting year for iConquerMS™ and Accelerated Cure Project (ACP), and a great springboard for our 2019 activities. We want to share a few of the highlights from 2018.
The Timeline of 2018 Activities for iConquerMS
AAN – American Academy of Neurology Annual Meeting
ACTRIMS – Americas Committee for Treatment and Research in Multiple Sclerosis Annual Meeting
CMSC – Consortium of MS Centers Annual meeting
DIA – Drug Information Association Annual Meeting
ECTRIMS – European Committee for Treatment and Research in Multiple Sclerosis Annual Meeting
ISPOR – International Society of Pharmacoeconomics Outcomes Research (US and EU Conferences)
NMSS – National Multiple Sclerosis Society
PCORI – People Centered Outcomes Research Institute
REAL MS – Research Engagement About Life with MS, iConquerMS longitudinal study
Collaborations are the Key to our Impact and Sustainability
In the US and worldwide, iConquerMS™ is viewed as a reliable and valuable partner. These collaborations provide visibility and resources for the sustainability of iConquerMS. Funding from these projects supports project specific activities, general operations and enhancements to the portal.
Key collaboration partners making headlines for 2018 include:
- National MS Society Supports iConquerMS Infrastructure/Operations for Mutual Goals
- Collaboration with EMD Serono brings the “Voice” of People with MS to Drug Development
- RealTalk MS, a Leading Patient-Centered MS Research Podcast, Collaborates with iConquerMS
- Italian MS Society: A First Step to Harmonize Collection and Use of Patient-Reported Outcomes across Cultures
Leadership Summit focuses on Transformational Collaborations
For the fourth year, people with MS and their support partners, health care providers, researchers, representatives from industry and academia and members of the iConquerMS governance gathered in Boston to identify next steps in the network’s development. This year’s Summit was received unrestricted support from Biogen, EMD Serono, and Genentech/Roche.
Great ideas for transformational collaborations were identified in the context of shared understanding of the needs, priorities and capabilities of different MS stakeholders. You can read a full report of the Summit in the ACP Newsletter.
ACP Repository News and Potential Linkage of Repository and iConquerMS Data
The Accelerated Cure Project for MS began over a decade ago, with a repository for DNA samples of people with multiple sclerosis. Repository DNA Samples to be Sequenced and Data Returned to ACP to Accelerate MS Research thanks to support from Regeneron Genetics Center to analyze all 3,200 ACP Repository DNA samples.
A small pilot DNA collection was done among a few select iConquerMS members, but substantial funding is needed to offer this option to all members. 2019 seems like a good year to explore the opportunity for combining ACP’s initiatives of the Repository and iConquerMS, in the area of biosample collections.
PCORI Continues to provide Support for iConquerMS and Other PPRNs
In the 4th Quarter of 2018, along with the other 19 PPRNs, iConquerMS gained support from PCORI for a six-month extension to our PCORnet Phase II contract (until 3/31/19). PCORI created two funding opportunities to support the PPRNs and enhance their contribution to the collective PPRN Network, and we have applied for this competitive process. Read Joe Selby’s blog on the topic to learn more.
Along with letters of support from outside agencies and researchers, we also included comments from our governance members, that speak to the value of iConquerMS on multiple levels and we hope their sentiments (included below) resonate with you as well.
Growing the network and these collaborations will remain the cornerstone of all we do in 2019. We extend our most sincere appreciation to each and every one of you for helping to make iConquerMS successful.
With sincere gratitude,
Robert McBurney and Laura Kolaczkowski
Thoughts from iConquerMS Governance Members
“I am very fortunate to have the opportunity to be part of the iConquerMS Research committee and have experienced firsthand the impact of their model. Working closely with the people who have MS has shaped my research agenda. ACP and iConquerMS have set the standard for patient-centered research and should be a role model for any researcher desiring to impact the lives of people with MS. I cannot imagine moving forward with my own research without engaging iConquerMS, or at the least, utilizing the model they have so expertly crafted.” – Deborah Backus, PhD, iConquerMS Research Committee
“iConquer MS opened new doors to me as a person living with Multiple Sclerosis to reclaim my professionalism after being sidelined by the condition. My voice and skills are clearly respected and cherished and I have been given another chance at productivity.” – Cherie Binns, iConquerMS Research Committee
“Accelerated Cure Project – ‘accelerating research towards a cure for MS.’ iConquerMS ‘governed by a majority of people with MS.’ Both consisting of compassionate individuals who care enough to revolutionize a broken system by being patient focused. Collaborating with clinicians, researchers, patients, and family members has been of the utmost importance through this ground-breaking transformation. Because of their efforts I have not only found solidarity with other MS patients but a new-found resurgence of hope for a cure.” – Shawn Feliciano, iConquerMS Research Committee
"Living with MS can sometimes make you feel alone and - even worse - hopeless. iConquer MS not only provides me with a sense of community but with also with the knowledge that the community is one of action. iConquer MS makes sure I get a seat at the table and puts a premium on the patient voice. Researchers, clinicians, family and friends are in this fight with us. Together we have hope. Together we will change the course of the disease. Together we will find a cure." – Fiona Hoey, iConquerMS Engagement Committee
“Have you ever worked on a jigsaw puzzle for hours or even days, only to find a piece was missing and the picture would never be complete? iConquerMS is that missing piece in multiple sclerosis research – only people living with MS can fully understand and articulate the personal needs and fill in the knowledge gaps. iConquerMS is fortunate to lead the way in people powered research, and we are poised to share lessons learned with networks working with other chronic conditions. Advancing people centered research engages and empowers everyone in meaningful ways to complete the picture.” – Laura Kolaczkowski, Co-Principal Investigator, iConquerMS Governing Board
“It’s important for me to stay connected with the community of researchers who are looking for answers. I consider it my duty to be part of the discovery process. I am not anonymous; I am not just a number. I am a resilient person who happens to have a chronic disease. The mission of ACP and iConquerMS grew as a response to the needs of people affected by MS that were not being addressed by the traditional paths of research. ACP and iConquerMS allow me the opportunity to drive, shape, and take charge of the research that will have a direct impact on my life, and the lives of others living with this disease.” – Karen Jackson, iConquerMS Engagement Committee
“ACP and iConquerMS are essential partners in my research on complementary and alternative medicine (CAM). ACP colleagues helped design this study to ensure that it responds to the interests and needs of individuals with MS, and members of iConquerMS will complete a survey and participate in focus groups to share their experience with CAM and advise on developing an integrated medicine approach to MS care. This study would not be possible without their collaboration. I am honored to be a member of the iConquerMS Research Committee and participate in the planning and decision-making that has and will continue to produce research that is responsive to the needs of people affected by MS and make a meaningful impact on their lives. As a long-time MS researcher, I am frankly astonished at the speed with which ACP has grown the iConquerMS PPRN and made it a powerful resource for the MS research community, and expanded the number, scope, and diversity of their excellent research initiatives. I cannot imagine a more deserving recipient of continued PCORI funding.” – Sarah Minden, MD, iConquerMS Research Committee
“The Accelerated Cure Project is a refreshing approach to research that puts individuals with Multiple Sclerosis squarely at the center of the research decision process giving voice to all stakeholders impacted by this chronic, progressive and, as of yet, incurable disease. This promotes new and innovative ways of thinking of MS that transcend the narrow, purely fact-based approach of the scientific experts and marries that academic knowledge with the input of the “life-experts” and their support providers who live with this disease twenty-four hours a day.” – Seth Morgan, MD, iConquerMS Research Committee
“iConquerMS is a potentially transformative project that – if properly funded, promoted, and utilized – should pave the way towards new avenues of MS research. The concept of crowdsourcing MS patient data and giving patients the chance to interact with MS researchers, thus giving voice to their own ideas regarding the direction of MS research, provides an as yet untapped reservoir of tremendous insight and wisdom. The experience of each MS patient is unique, as the disease strikes each individual in its own idiosyncratic and often wicked way. The ability to offer quantitative and qualitative analysis of these experiences to researchers worldwide gives the project a power never before seen in the field of MS research and should energize those investigating the disease with the spark of patient powered innovation.” – Marc Stecker, iConquerMS Engagement Committee
"When you are diagnosed with a disease like Multiple Sclerosis, it can leave you feeling isolated and powerless. Coming from a scientific background, I was instantly drawn to the iConquerMS initiative because it brings together MS researchers and people with MS. Through iConquerMS, people with MS have the power to shape the direction of research in the field. This ensures that the research conducted is relevant and impactful for those living with Multiple Sclerosis." – Amanda Windhof, PhD, iConquerMS Research Committee
“I am grateful to ACP and ICMS for providing members of the multiple sclerosis community with an opportunity to participate in the medical research that impacts our lives. Technological advancements have increased our ability to communicate and interact with sectors of society that were previously inaccessible. ACP and ICMS provides a bridge between the MS community and the researchers who work to improve our quality of life and for that I say ‘Thank You!’” – Tracy A. Todd, iConquerMS Engagement Committee
“My life and multiple sclerosis journey have been forever changed by the Accelerated Cure Project and iConquerMS. When unexpectedly diagnosed with M.S., I turned to research for a better understanding of this disease. Through amazing luck, I was brought into the ACP and iConquerMS fold. I have found strength, support, and knowledge from these extraordinary organizations that forge and strengthen connections between M.S. stakeholders, along with being at forefront of creating and nurturing new alliances. All of this work is for the benefit of multiple sclerosis patients like me. I am honored to be associated with ACP and iConquerMS.” – Anita Williams, Co-chair iConquerMS Engagement Committee
“The Accelerated Cure Project embodies Mahatma Gandhi’s charge to be the change you want to see in the world. ACP is transparent, revolutionary and transforming. The organization is changing the trajectory of life with multiple sclerosis by actively engaging patients, researchers, care partners, industry, and community stakeholders. ACP gives me a voice and a choice. With your support, you too can be an agent for change in the fight to cure MS.” – Teresa Wright-Johnson, iConquerMS Engagement Committee
“I can explain my commitment to iConquerMS with a quote from Tony Coelho: ‘Nothing about me, without me.’ iConquerMS is the link between patients and caregivers and the MS research community seeking answers.” – Phil Posner, PhD, iConquerMS Research Committee