According to an announcement from The Amyloidosis Research Consortium (ARC), the organization has launched version two of the My Amyloidosis Pathfinder (MAP) tool. The tool was developed as a way for amyloidosis patients to locate treatment centers or clinical trials for the condition. The newest version also helps the ARC maintain user data in the tool so that the information can be related to researchers who are studying the condition.
Amyloidosis is a disease in which amyloid fibrils, an abnormal protein, builds up in body tissue. There are thirty different types that are categorized by which protein is affected and misfolds. Some forms of the disease are genetic, but there are others that are acquired. Symptoms can vary considerably depending on the type, but they can include fatigue, enlargement of the tongue, feeling faint upon standing, bleeding, diarrhea, weight loss, and enlargement of the spleen. Prognosis for amyloidosis also varies by type; common forms can be fatal in a year or two if left untreated. You can learn more about amyloidosis by clicking here.
The MAP tool was first launched by ARC in March 2017. The tool serves a major benefit to amyloidosis sufferers by informing them of potential clinical trials that they could potentially become a part of if they qualify. For many people with rare disease, finding information about clinical trials that could be of benefit to them is difficult. Additionally, many disease sufferers are simply not aware of the possibilities when it comes to finding clinical trials. An ARC study from 2015 found that 79 percent of patients would consider being part of a trial if they were given more in-depth information about them. Trials can be important for rare disease patients in general, especially if there are few available treatment options.
