BOSTON, March 9, 2017 /PRNewswire-USNewswire/ -- In a recent ARC patient study, 79% of patients said with better information and access they would consider participating in a clinical trial. The major obstacles which prevent patients from participating in clinical trials were cited as the lack of education about clinical trials, complexities of accessing information about trials, and the use of overly scientific language.
"The inability to complete trials in a timely manner delays the approval of potentially effective treatments, it represents a huge barrier to the development of much needed treatments for rare diseases such as amyloidosis where no there are no FDA approved therapies," says Isabelle Lousada, CEO ARC, "It ultimately blocks progress and our path to a cure."
To address patients' concerns and break down the barriers to participation in clinical research, ARC partnered with Patient Discovery to co-innovate on MAP. MAP is a data-driven clinical trial tool which intelligently matches patients with clinical trials and treatment centers.
"This tool provides early engagement and educational components, empowering patients with a greater understanding of the value of participating in clinical trials," says Shelby Chamberlain, co-founder of Patient Discovery. "It was developed with the input from a diverse team of stakeholders, including clinical researchers, patient advocates, and representatives from pharmaceutical companies. We are excited to use this tool to help other patient populations within the rare disease community."
"We believe MAP provides a much needed tool for amyloidosis," Lousada states. "The anonymized data collected by MAP can inform clinical trial design; by meeting patient needs they will accrue faster, better serve the patient community, and ultimately contribute to accelerating much needed therapies for amyloidosis."
Systemic amyloidosis comprise a number of rare and fatal diseases caused by the misfolding of proteins and characterized by progressive organ damages. These misfolded proteins aggregate and deposit in multiple vital organs and systems (e.g., heart, kidneys, nervous system), causing significant morbidity and mortality.
About the Amyloidosis Research Consortium
The Amyloidosis Research Consortium was established to address critical needs in clinical trials and related research for the underserved group of systemic amyloid diseases. It brings together experts in the field to address the challenges that exist in developing diagnostic tools and carrying out collaborative and innovative clinical trials. The Amyloidosis Research Consortium is committed to building collaborative relationships between patients, academia, industry, foundations, federal funders, and regulators to facilitate and speed new therapies to market. The Amyloidosis Research Consortium is focused on increasing the amount of research in amyloidosis and building a prioritized portfolio of translational research and clinical research. Its aim is to address the urgent, unmet medical needs in patients with amyloidosis. For more information, visit www.arci.org.
About Patient Discovery
Patient Discovery combines an expertise in disruptive learning technology and data solutions with a passion for helping patients. The team partnered with the Amyloidosis Research Consortium to co-innovate on MAP, which was designed to address the unmet needs of patients within the rare disease community. For more information on MAP, please visit www.myamyloidosisipathfinder.org.
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SOURCE Amyloidosis Research Consortium