WALTHAM, Mass., May 30, 2018 /PRNewswire-USNewswire/ -- The iConquerMS™ People-Powered Research Network, managed by Accelerated Cure Project, and the Italian MS Society PROMOPRO-MS database have announced a collaboration on a project to explore the feasibility of standardizing and harmonizing patient-reported outcome (PRO) measures between the two initiatives. Both organizations have substantial experience in collecting PROs for MS research and healthcare.
The overall goal of the collaboration is to improve the health, healthcare and quality of life of people affected by MS by capturing the entire experience of symptoms, abilities and quality of life in a standardized form. There is a rapidly growing interest in shared treatment decision-making in MS based on PROs. Incorporating the "patient voice" in research, drug development, drug approvals, and healthcare technology assessments, requires the standardization and harmonization of PRO measures for MS in culturally appropriate ways, across different countries.
Despite the progress that has been made in MS treatment research over the past 25 years, people with MS and their physicians are faced with substantial challenges in treatment decision-making. Benefit-risk profiles of the available disease modifying therapeutics (DMTs) are complex and major evidence gaps still remain, particularly on the effects of treatment on the symptoms, disabilities and quality of life areas that matter most to people with MS.
"As a person living with MS who experiences many debilitating symptoms that are not routineIy collected in a standardized form at or between clinic visits, nor in clinical trials for new MS medicines, I am excited by the prospect that this collaboration will bring the outcomes that matter most to people affected by MS into every aspect of my care and in research to improve treatments," said Laura Kolaczkowski, Co-Principal Investigator of the iConquerMS™ People-Powered Research Network.
"This collaboration aims to establish a system and tools for the collection, presentation and interpretation of patient-reported health information and outcomes for MS, in culturally-appropriate ways, across countries for use in research and in shared healthcare decision-making," commented Giampaolo Brichetto, Coordinator of Research in Rehabilitation and Principal Investigator of the PROMOPRO-MS database at the Italian Multiple Sclerosis Society Foundation.
There are a very large number of PRO survey instruments for MS, and their ad hoc use in addressing research questions are confounding factors for translating the results of research studies involving PROs into improvements in the health, healthcare and quality of life for people with MS. There have been a number of publications on the relationships amongst the diverse PRO survey instruments. A clear need has been identified for more research on the systems and tools used for MS PRO collection, and the presentation and interpretation of PROs for use in healthcare decision-making.
"The results of the collaboration will provide important insights to advise Regulatory Agencies and the other stakeholders on an appropriate patient-reported outcome core data set to be collected and included in MS registries and beyond," said Paola Zaratin, Italian MS Society Scientific Director.
"Standardizing, and harmonizing the use of, a core set of PRO measures for MS across countries and cultures will ultimately enable patients, physicians, regulatory agencies, and other stakeholders to 'speak the same language' worldwide about the entire experience of MS beyond standard clinical assessments, and for that information to be included along with clinical assessments in electronic health records and registries, in research studies, and as outcome measures in product development clinical trials," explained Robert McBurney, Co-Principal Investigator of the iConquerMS™ People-Powered Research Network and CEO of Accelerated Cure Project.
About the iConquerMS™ People-Powered Research Network
iConquerMS™ (www.iConquerMS.org) is a research initiative by and for individuals affected by MS who contribute their ideas and their health data. iConquerMS™ was established in 2014 by the Accelerated Cure Project for MS, a non-profit organization with proven experience sharing resources with MS researchers worldwide, in partnership with Feinstein Kean Healthcare (www.fkhealth.com) and Arizona State University. To date, funding for iConquerMS™ has been largely provided by the Patient-Centered Outcomes Research Institute (PCORI) (www.PCORI.org) and the initiative is part of PCORnet (www.pcornet.org), the national patient-centred clinical research network. Almost 5,000 individuals living with MS are currently registered as iConquerMS™ research participants, constituting a large and growing cohort for data-driven research into topics of interest for people affected MS. iConquerMS™ is available for and enthusiastically open to research collaborations with U.S. and international academic, government and industry organizations.
About Accelerated Cure Project
Accelerated Cure Project (www.acceleratedcure.org) is a patient-founded non-profit organization dedicated to accelerating research efforts to improve diagnoses, optimize treatment outcomes, and develop cures for MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers with resources they need to explore novel research ideas that can lead to better outcomes for people living with MS. The major programs of Accelerated Cure Project are the ACP Repository and the iConquerMS™ People-Powered Research Network.
About the Italian MS Society
The Italian Multiple Sclerosis Society - AISM, through its Foundation - FISM (Italian Multiple Sclerosis Foundation), is the leading funding agency of MS research in Italy and the third leading funding agency worldwide of research to better understand the causes of illness, to improve the quality of life of people with MS (PwMS), and to provide better treatment towards a definitive cure for a MS. The overall goal of the Italian MS Society is to make the bridge walkable between PwMS and healthcare government agencies and thus support PwMS in making decisions for their treatments and quality of life. The Italian MS Society performs research in the area of PRO through the PROMOPRO-MS initiative that has been funded since 2013.
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SOURCE Accelerated Cure Project for Multiple Sclerosis