Porphyria News Opens Survey to Gain More Insight Into Disease Community

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by Patricia Silva PhD |

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Porphyria News is conducting an online survey with the goal of gaining greater insight into the characteristics of the porphyria community, their experiences in managing the disease, and their needs.

It takes an all-comer approach, meaning everyone is invited to participate, including patients, caregivers, family members, researchers, and healthcare professionals.

The survey was designed to take no more than 15 minutes to complete, and includes up to 35 questions focused on demographics, socioeconomics, disease symptoms, treatments, side effects, and the desire to participate in clinical trials. For those who would like to participate, the survey is available by clicking the link below.

Porphyria News launched the survey in collaboration with BioNews Insights, the research arm of BioNews Services, which publishes this website. The American Porphyria Foundation (APF) was also involved in the survey’s design and its distribution.

“Our high-level goal at Insights is to improve the quality of life for patients who live with rare diseases — in this case, porphyria,” Ty Dunkelberger, general manager of BioNews Insights, said in a statement to Porphyria News.

Active participation from the community in surveys, clinical trials, and other studies is important in helping to advance the field of research and care for porphyria, as well as for better advocacy of community-wide needs.

“This survey, created by BioNews Insights with guidance from the APF, may offer interesting and valuable insight on the porphyria patient journey. I encourage our community to take a few moments to participate,” Kristen Wheeden, executive director of the APF, said in an emailed statement.

Collected survey data will be analyzed, and the overall results shared on the Porphyria News website.

“We view our role as one that helps inform all touchpoints in the rare disease space,” Dunkelberger said. “Specifically, we aim to help inform patients, caregivers, loved ones, researchers, pharmaceutical companies, clinical research organizations, and others to bring together greater understanding and awareness by sharing what we have learned through instrument reports, news stories written by science writers, forum posts, social media, and other mediums.”

All data gathered in this survey will be processed and handled legally and ethically, according to data protection rules. The research team uses the Qualtrics system, which ensures high-quality data protection capabilities that meet national and international standards for data security, including those established by the Health Insurance Portability and Accountability Act.

“Our goal with this survey is to more holistically understand the community’s experiences and how Porphyria News can better serve the community,” said Tré LaRosa, research lead at BioNews Insights. “Further surveys will be designed so as to fill in gaps wherever necessary across the categories of socioeconomic factors, symptomatology, treatment plans, descriptives, disease-specific nuances, etc.”