Diagnostics, EXPLORE B and POWER in Porphyria

Kristen Wheeden of the United Porphyrias Association joins as podcast co-host to ask David Cassiman, Pieter Vermeersch and Amy Dickey about improving diagnostics in porphyria and the outcomes of the EXPLORE B and POWER surveys exploring quality of life. Development and validation of diagnostic algorithms for the laboratory diagnosis of porphyrias Stefanie Lefever, et al https://doi.org/10.1002/jimd.12545 EXPLORE B: A prospective, long-term natural history study of patients with acute hepatic porphyria with chronic symptoms David Cassiman, et al https://doi.org/10.1002/jimd.12551 Quantifying the impact of symptomatic acute hepatic porphyria on well-being via patient-reported outcomes: Results from the Porphyria Worldwide Patient Experience Research (POWER) study Amy Dickey, et al https://doi.org/10.1002/jmd2.12343