We’re seeking your insights and input into two patient-centered areas of research: health-related app use and biobanking. These two surveys represent joint efforts with two sets of partners and data is being collected across multiple groups of people engaged in improving health. This information will help shape plans and future strategies for better ways to serve our community and advance research. Thank you in advance for your time and interest!
SMARTPHONE & APP SURVEY:
There’s no doubt that electronic devices – especially cell phones – have changed our culture. Now mobile phone applications (“apps”) are being developed to aid research and help individuals track and understand symptom patterns that may be tools for better self-care. We are working with trusted partners to explore how cell phones might be used in CFS and chronic pain research. Will you take a moment to share your thoughts with us? All responses are anonymous and will help inform our exploration. Take the cell phone survey at http://bit.ly/symptom-apps.
Our biobanking partner, Genetic Alliance is conducting a short, anonymous survey about biobanks. (We are defining biobank as a collection of human biological samples, such as blood or tissue samples and the information associated with these samples, such as health information, that are stored for future use and managed according to professional standards.) Help Genetic Alliance take the community’s “pulse” on biobanking. This survey has been approved by the Genetic Alliance Institutional Review Board #IORG0003358. Take the biobanking survey at http://bit.ly/biobank-survey.
Thank you for participating!October 12, 2011