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Prothena shares patient experience survey results
August 2015
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DUBLIN—A recent patient experience survey of patients with systemic amyloidosis, a progressive disease caused by tissue deposition of misfolded proteins that leads to progressive organ damage, has shed light on issues of diagnosis and treatment for this patient population. Prothena Corporation plc collaborated on this venture with the Amyloidosis Research Consortium, which conducted a 16-question survey of more than 500 individuals. Forty-nine percent of study participants had to visit at least four physicians to get a diagnosis, while 34 percent had to visit at least five physicians. More than 75 percent of these individuals were diagnosed by a specialist. The study also revealed that 54 percent of participants had difficulty tolerating current off-label treatments, and only 30 percent reported a definitive improvement in quality of life after treatment. Nearly half said they would consider participating in a clinical trial, if informed.
 
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