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The Amyloidosis Research Consortium (ARC) recently launched the latest version of the My Amyloidosis Pathfinder (MAP) tool. This groundbreaking tool was created to help connect amyloidosis patients to appropriate treatment centers and clinical trials for their disease. The latest updates will help ARC more effectively manage user data, keep the data secure and share it anonymously with researchers to help drive amyloidosis research forward.

Since the inaugural launch of MAP in March of this year, more than 300 patients and caregivers have signed up for the tool. MAP has successfully matched patients to newly opened clinical trials. Finding the right treatment center is a critical step in getting treatment. MAP also identifies amyloidosis treatment centers with the capability to provide excellent care for their specific type of amyloidosis. ARC provides extensive information on each center, allowing patients to make informed decisions that are right for them.

79% of patients said with better information and access they would consider participating in a clinical trial — ARC Patient Journey Study, 2015

In addition to matching patients to treatment centers, MAP also matches patients to clinical trials for which they may be eligible. Clinical trials are a critical step in the development of much needed drugs for amyloidosis patients, however, these important trials are often significantly delayed due to lack of participants. This can significantly slow down the rate at which new drugs are discovered, tested and made available to patients. In amyloidosis, clinical trials can be a great way to access promising new treatments.

“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.” — Isabelle Lousada, CEO, Amyloidosis Research Consortium

 

By providing easy access and trusted support, MAP educates patients about the value of participation. MAP increases enrollment and reduces time for accrual to clinical trials, thereby accelerating the amyloidosis drug development process. Data collected through the online tool also provides valuable information and allows ARC to identify under-served cohorts of patients. This in turn will help inform the design of clinical trials and ensure that research can be conducted efficiently, quickly, and responsibly. MAP is a novel tool in amyloidosis research and ARC is committed to enhancing its capabilities it to help patients find and access the best treatments.

My Amyloidosis Pathfinder

 

To learn more about MAP, please visit the website: www.myamyloidosispathfinder.org

 

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