San Diego, October 24, 2017. With this survey, CFTechnology.org (the non-profit arm of CysticFibrosis.com) and Portable Genomics (a digital platform for data collection, sharing and monetization) are seeking to understand the CF community’s familiarity and comfort level with the concepts of Precision Medicine, personal health, and the business of health data. Access the survey here.
This survey is accompanying a current pilot study CFTechnology and Portable Genomics have initiated with 20 digital opinion leader patients from the CysticFibrosis.com community, to collect CF biometrics through PG mobile App. It is also building a new patient to data providers and device makers relationship, partnering with The Genome and BioInformatics Consortium (University of British Columbia) who provides free microbiome testing to our participants, partnering with NuvoAir Ab (Stockholm, Sweden) who provides free connected spirometers, with Pari Respiratory (Midlothian, VA) who provides free nebulizers and compressors, with Plumelabs (Paris, France) who grants access to the their air quality and pollution forecast technology.
This is building a new role for CF patients, to accelerate the Precision Medicine discovery process for new treatments and ultimately to cure CF. Patients can now collecting highly valuable and new datasets, with industry partners, and when they decide to share data with the life science industry, every stakeholder will be retributed, including the patients.
The survey and its companion video, designed and realized by CF Patients, are made to summarize it all. It is a first step to educate patients about the power of the data-driven Precision Medicine and its new economy, anticipating the deployment at scale of this platform within the CysticFibrosis.com community in a second step.
The results will be shared with the CF community and rare diseases communities through the press, the media and peer-reviewed journals as well. Stay tuned.
The CFTechnology Foundation: Jeanne Barnett, Founder and CEO
Portable Genomics, Inc.: Patrick Merel, Ph.D., Founder and CEO
Video 2017 ©Blake Davis Communications
Illustrations 2017 ©CFTechnology, 2017 @Portable Genomics, Inc., 2017 ©Blake Davis Communications, Icon by Freepik from www.flaticon.com
October 24, 2017