Since its launch a year ago, this innovative tool for improving early and accurate diagnosis of amyloidosis, has been downloaded by more than 2000 users in over 10 countries.
A recent ARC survey showed that patients typically see four or more physicians before getting accurately diagnosed, and often those who were misdiagnosed were receiving treatment for their misdiagnosis. The app was developed to provide healthcare professionals with easy, mobile access to critical and current medical information on this rare and often fatal disease to help facilitate and improve the rate of diagnosis. In addition to etiology and pathogenesis, the app identifies the complex clinical symptoms that too often result in misdiagnosis and lead to critical delays in accurate diagnosis and treatment for patients.
The latest version includes updated diagnostic algorithms, providing instant access to the ideal process and accurate testing path for the specific type of amyloidosis. The app now houses extensive educational resources for clinicians on the disease complexity, including; journal articles, treatment protocols, disease registries, genetic information and diagnostic test codes. The app also highlights current drug development for amyloidosis and accompanying clinical trials that may be relevant for amyloidosis patients.
“Amyloidosis is significantly under-diagnosed, and patients often see many physicians, taking years to get diagnosed. It is critical to get patients diagnosed earlier in order for them to benefit from current and novel treatments” says Martha Grogan, Cardiologist and Director of the Cardiac Amyloid Clinic at Mayo Clinic. “ARC’s Amyloidosis Clinical Resources App is a vital resource that has been shown to successfully enable physicians to make an earlier diagnosis.”
The medical information and resources in the app were provided and reviewed by amyloidosis experts from around the world and the content is continually updated to ensure health care professionals always have access to the latest medical information. With the new updates, the app now has a survey for users to complete which will provide valuable feedback for ongoing improvements.
In addition to the app, ARC also has a clinical trial and treatment center finder tool, My Amyloidosis Pathfinder (MAP), where patients and caregivers can find personalized treatment centers and clinical trials based on their type of amyloidosis. This tool empowers patients to find the best possible care and treatment that is right for them. These tools are part of ARC’s commitment to improving the awareness and education of amyloidosis.
ARC encourages patients to share the Clinical Resources App with their doctors and to advocate for all healthcare professionals to download this resource.