New Online Platform Created to Support Sickle Cell Disease Community
rareLife solutions, the health tech, design and research team behind oneSCDvoice and other custom rare disease platforms, will launch the modular community system later this month.
Pre-registration is now open for SCD patients, their family members, caregivers and advocates who want to be part of this new online community, created as part of a collaboration between SCD healthcare providers, advocacy leaders and pharmaceutical partners.
“This collaborative digital education platform provides professionally vetted links to credible information about SCD,” Dan Donovan, co-founder and CEO of rareLife, said in a press release. “Specifically, this information will help patients increase their knowledge of the disease, lifestyle issues and help demystify clinical trials.”
oneSCDvoice.com is “a sickle cell community tailored to you,” says the press release, seeking to provide trustworthy information that will help patients increase their knowledge of the disease, acquire greater understanding of available clinical trials and more easily obtain much-needed support.
“So far, our collaboration has brought together more than 25 active and passionate SCD medical and advocacy advisors, Pfizer Rare Disease and our own team at rareLife. The community advisors are providing invaluable insights on elements such as subjects, topics, sources, language – even the platform’s colors and graphics,” Donovan said. “It really becomes ‘their home’ online for SCD. The Clinical Trial Education section, which provides valuable resources to educate on topics such as diversity, safety, and participation in clinical trials, was the result of efforts led by Pfizer, who has deep expertise in this area.”
For T. Anthony Howell, co-founder and chief operations officer of rareLife, oneSCDvoice.com is like having your own “cybrarian” – meaning the platform offers a unique education feature that inserts trusted links directly into conversations, just like a librarian would do, when handing a student resource materials.
“Our community advisors create a library of Trusted Resources that houses thousands of links to SCD medical information, research, patient advocates, care providers, organizations, news, community activities, and more. In addition, oneSCDvoice provides a SMART Social Wall where community-driven conversations occur,” Howell said.
“The unique feature is that our software – we call it the ‘cybrarian’ – analyzes the posts, goes into the Trusted Resources to find vetted content relevant to the posted topics, and then inserts great videos, experts, news articles, etc. directly into the conversation – at the point when people are talking about it and receptive to learn more,” he added.
oneSCDvoice.com also is aligned with the U.S. Food and Drug Administration (FDA) priorities, now turning special attention to patient voices.
With the passage of the 21st Century Cures Act, the FDA is mandated to create a framework by which patients can be heard. Now, in addition to clinical trial data collected through human trials, the agency can consider other information to help guide regulators in their assessments of new treatments.
Overall, the new online platform tries to address a long-standing difficulty faced by those living with SCD – the lack of reliable SCD information. “oneSCDvoice represents a solution to this situation,” Howell said.
The platform also could help with isolation and stigma SCD patients often experience.
“oneSCDvoice will allow neutral, knowledgeable, and diplomatic Community Managers who are trained to make sure nobody who engages with this platform takes his or her journey alone,” he added.
To pre-register for oneSCDvoice.com, sign up at no cost.