A New Model for Patient Engagement for Cystic Fibrosis Patients and Caregivers
Imogene
July 7, 2018
Our blog appears in the DIA global forum. It has the results of our initial survey (which took place from 2017-2018) where 1200 of you responded, both patients and caregivers.
CFTechnology.org, a non-profit, global online community of over 18,000 cystic fibrosis (CF) patients and caregivers, has launched a study to begin to leverage the potential benefit of genomic data sharing in the context of this genetic disease. The community was founded in 1996 on the principles of sharing information and putting the patient first, now more commonly addressed as “big data” and characteristic of recent “patient-centric” initiatives.
You can read the full article here: Our survey results!
We are working to bring you the results called for in the survey where patients own their data and can get paid for it if they choose.
Salt and Light,
Imogene and Corey Nislow PhD
