Cure-E-Us Where is our Survey Leading?
Of the 1112 participants for our survey “Discovery, Research, and Profit” www.CFTechnology.org only two claimed to be physicians! One from Florida and one from California. 53% are patients, and 44% are caregivers. Who has the authority? Since 1996, when our forums at CysticFibrosis.com began, you may have wondered: “Where are …
Digital Spirometry and the Cystic Fibrosis patient
For Cystic Fibrosis, the spirometry test given by the clinic is a very important measurement. From Wikipedia we learn: “Spirometry (meaning the measuring of breath) is the most common of the pulmonary function tests (PFTs). It measures lung function, specifically the amount (volume) and/or speed (flow) of air that can …
An App for Cystic Fibrosis to bring Data to Market
Update on our app for Cystic Fibrosis: the pilot study We are getting ready for our Pilot Study: 20 patients for 30 days using a customizable app that measures 18 different modules for CF. I recorded the above 2 minute audio slide show overview of the presentation I gave at …
Fertile Areas for Experimentation: a New App for Cystic Fibrosis!
One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …
The Data Will See You Now! and Cystic Fibrosis Data is Valuable!
I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …
Evolution of a New App for Cystic Fibrosis management
Behind The Scenes With A New App For Managing Your Cystic Fibrosis By Jeanne Barnett, founder of CysticFibrosis.com In my 21 years of operating CysticFibrosis.com and from reading over two million messages in our forums, I’ve learned that CF patients generate fascinating data that is valuable to other patients, caregivers, …
A Day with Portable Genomics for Cystic Fibrosis management
Using the Portable Genomics App CFtechnology and Portable Genomics are proud to create a partnership using a new, customizable app! In the Digital Age, it is no surprise that apps are finding their way into the medical field. Technology is everywhere, so why not harness the power of …
Radio Interview: CRISPR Gene Editing (relevant to Cystic Fibrosis genetics)
“There has never been a more powerful biological tool or one with more potential to both improve the world and endanger it.” For an in-depth look at the progress being made and the potential of CRISPR, the gene editing tool, listen to this radio interview on National Public Radio. Cystic …
(Cystic Fibrosis Diabetes) First FDA approved artificial pancreas and other 2016 Digital health highlights
The “What We Learnt in Digital Health in 2016” article (by Bertalan Meskó, MD, PhD) takes a look at the successes, failures and challenges in the field of digital health in 2016 and provides an interesting view on some current trends. The first FDA-approved artificial pancreas is mentioned (which may be of interest …
Flourescent Sensor is a new Low-Cost Tool for Cystic Fibrosis diagnosis
Read the article here on sciencedaily.com “Scientists have developed a new diagnostic test for cystic fibrosis. The new device provides a cheaper, easier way to detect levels of chloride in sweat, which are elevated in cystic fibrosis patients.” “Cystic fibrosis is caused by two faulty copies of a gene that affects …