As part of our mission to improve early diagnosis and accelerate amyloidosis treatment, the ARC has developed a set of very easy to use “tools” and educational documents that we distribute at all meetings and conferences in which we participate. These include the following:
Two sets of bookmarks containing the statistics from an online survey of patients, outlining the long duration it took them to achieve an accurate diagnosis as well as the number of physicians that patients had to see before receiving a diagnosis. These bookmarks include one specific to cardiac amyloidosis and a more general one for various types of amyloidosis. The statistics from this survey resulted in published posters, abstracts, and a white paper.
Laminated Pocket Cards
The Clinical Trials Pocket Card identifies current clinical trials and their key inclusion criteria for AL Amyloidosis and ATTR Amyloidosis. These pocket cards are updated quarterly to keep them current.
The Cardiac Alert Pocket Card identifies “low voltage” EKGs in combination with ECHO images of increased ventricular mass, which are very specific for amyloid and should trigger additional testing to confirm amyloidosis.
These pocket cards are valuable to physicians, nurses, sonographers, and EKG technicians and both pocket cards can be ordered through the arci.org website.
Amyloidosis Clinical Resources App
A rare and challenging set of diseases, including AL light chain, ATTR (hereditary transthyretin), AA (secondary), and TTR wild-type are in our new app. The Amyloidosis Clinical Resources App provides clinically relevant information that offers healthcare professionals a disease overview and interactive tools to assist with earlier diagnosis and therapeutic intervention. It contains easily accessible disease information - right in your coat pocket on your smart phone. The app also provides a wealth of physician and patient resources including educational webinars, treatment centers and patient groups around the world.
The Amyloidosis Clinical Resources App is FREE and available on the iTunes App store and the Google Play store. (Search Amyloidosis Clinical Resources.)
The "Advancing Research Through Partnership" Flyer
This flyer details the ARC in the research landscape - bringing together researchers, advocates, industry, key opinion leaders, educators and government regulators. This tool expands on our achievements in patient advocacy; our collaborative work in building a network of core amyloidosis treatment centers; and our MAP project, an amyloidosis clinical trial finder tool which will be launched this year to support and encourage patients to explore clinical trials.