Funding for this research was provided by:
First Online: 19 June 2018
Compliance with Ethical Standards
: This work was supported by Alnylam Pharmaceuticals, Cambridge, MA, USA. Data collection and analysis were performed by Modus Outcomes under the direction of the authors.
: Amy Simon, William Querbes, Alex Wei, Craig Penz, Jae B. Kim, and Sonalee Agarwal are employees of Alnylam Pharmaceuticals, which sponsored this study. Farrah Pompilus, Sara Strzok, and Patrick Marquis are employees of Modus Outcomes and received funding from Alnylam Pharmaceuticals to conduct the study. Desiree Lyon Howe and Jessica R. Hungate are employees of the American Porphyria Foundation.
: The data that support the findings of this study may be available on request from the corresponding author (AS), based on the specific request. The data are not publicly available because they contain information that could compromise research participant privacy/consent.