Some Results from our Survey!

I

Imogene

Administrator
Thanks to all who took the survey so far! 74 people have taken it.

63% have CF

32% are primary Care Givers

Most people are from the United States with California, Pennsylvania, and Texas being the states most respresented.

Members from Germany, Ireland, and Saudi Arabia have also weighed in!

More to come...

Have you taken our survey?
 
I

Imogene

Administrator
  • 211 people have taken the survey!
  • 82% come from the USA. These states are represented: Alaska, Arizona, California, Colorado, Connecticut, Florida, Georgia, Idaho, Indiana, Illinois, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Nevada, New Jersey, New Mexico, New York, North Carolina, Ohio, Oregon, Pennsylvania, South Carolina, Tennessee, Texas, Utah, Virginia, Washington, Wisconsin!
  • Other countries represented are: Australia, Barbados, Belarus, Brazil, Canada, Denmark, Germany, Ireland, Italy, Portugal, Pakistan, Saudi Arabia, South Africa and the UK
  • 90% would like to have free devices such as a digital spirometer.
  • 76% would share their data if they were compensated
  • 33% would share it without compensation
  • 33% would like part of it to go to charity.
 
I

Imogene

Administrator
220 people have participated! We have new participants from North Dakota, Portugal, Israel, and Mexico!

A message came from a mom at the CFF conference with Tamika Grubbs RN:

"Hey girl, this is Jenny. You are lucky I love you so much, because I just completed your survey and it took me 15 minutes to find the piece of paper that had my gene mutations on it. So needless to say, it's done! You're awesome! It took me too long to Complete it too. I think it's worth it. It's so smart. The idea that you could get paid for all that value data is way cool. Thank you again, Love"

I am carrying this message around with me! I can't count the number of hours it took to make the survey...Patrick Merel PhD, Corey Nislow, PhD, Melissa75 and I worked for days...
The time frame given on Survey Monkey for this survey is is 9 minutes. The average time spent is 6 minutes. I think if you have to look for the answers and think hard about them, then it will take longer...but like Jenny said after all the time spent on this with 220 people and the creators.."It is worth it"...so let's take it to the next level...

Take the survey if you have been waiting: www.cftechnology.org and pass it on to your network! We need 1000 to make us look serious to industry leaders!

Salt and Light,
Imogene
 
I

Imogene

Administrator
Wow! We are over 300 participants! If you are curious about how this app will work with you for research, discovery, and profit...then take our survey...and thanks and appreciation to the 305 who have taken it so far.

$50.00 gift cards have been sent to participants in Connecticut, Illinois, and New York states!

A survey is a teaching/learning tool. We need your input to begin this new business model.
Watch the excellent video, take the survey.

www.cftechnology.org
 
I

Imogene

Administrator
In the US you own your medical records but depending on the state you live in, you may have to pay for copies...

https://www.verywell.com/cost-of-getting-copies-of-your-medical-records-2615313

Same in Canada:

https://www.cmpa-acpm.ca/serve/docs...umentation/who_owns_the_medical_record-e.html

Through our survey, we are finding 30% of the participants don't keep medical records, yet 33% think their data is worth hundreds of dollars, 29% think thousands of dollars, 15% value their data at more than $100,000.00!

What about you?

Take our survey and weigh in:

www.cftechnology.org
 
I

Imogene

Administrator
We are aiming for 1000 participants for our Survey! That is a lot of CFers and Caregivers. So far 350 have taken the survey.

Thanks Everyone who took the survey...at 6:45 we now have 386 participants!

51% have CF
45% are Caregivers
83% are from the US
3% are from South Africa
2% from the UK and Ireland
9% are from California
7% are from Florida
6% are from Texas
27% are ages 19-29
26% are ages 30-44

90% know their CF mutations

48% do not know how many CFTR mutations they have been screened for. The CFF average screening is 23-40 and yet there are over 2000 mutations on the CFTR gene!
 
I

Imogene

Administrator
Wow~ We are rolling along with 414 participants! Our latest $50.00 Gift Card is from Colorado. We are offering another $50.00 Gift Card to the 500th participant.

58% of the participants would be concerned about an apps privacy policy and
76% would want to know if the app company was selling their data!

Take our survey at www.cftechnology.org
 
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