Take our Survey for Data Discovery, Research, and Profit...moving to 500 participants

[Imogene]

So far we have had 444 participants! The 500th participant will receive a $50.00 Gift Card! www.cftechnology.org to take the survey!

We received many comments (at the end of the survey) and here they are:

Thank you for helping improve the CF world!

this survey could be a little better organized.

I have had a double lung transplant but like to keep up with current medicines & hope that one day that the medicines will help other parts of the body effected with CF

Thank you.

Mother of 17 y/o daughter w/cf
Please send me more information

Thank you

Caregiver of cfer
Look forward to learning more
My son's PFT is currently 78

how do i receive the money for the survey ?

I'd be interested in a browser version as well, since I don't like typing on my phone.

42 yo with CF, two children negative for CF


Thank you for the survey.

I think this is a great idea I wish I would have had a app like that when I was younger y'all are going to help a lot of cfers I do believe

This sounds great!

Looking forward to hearing more. I live in Northern VA near Washington, DC. I just turn 38 years old. Doctors said I wouldn't live past childhood but look at me now!

Thanks!

Thank you for the survey.

This sounds like a very good idea to me!

I am a caregiver for my adolescent son

I hate price gouging from Big Pharma!!

mother

Very interesting project

The request for compensation for the data is an incentive for my CFers not me. I would do it for free but asking them to do yet another "protocol" maybe encouraged by compensation.

I like this initiative, it's going to be useful.

THANK GOD FOR YOU xoxo

I am concerned that the rare mutations will never receive the attention they deserve.

Even with insurance our care is insanely pricey. I barely make ends meet now while companies get by with tons of my data. From the amount of studies I’ve been a part of the compensation is highly lacking. I want a longer life for myself and others, but quite literally at what cost?

2 boys with CF under 18

I want to help out where I can be used.
Send me information.

Would like more info. If my sons are okay with it, then yes.


Quite excited!

Remember, I'm still on a Droid

Very excited about this project!

I would love to help NJSOCF because they help adults in NJ that have CF with monetary and food needs

Thanks!

 

[Imogene]

Hoping to get to the 500 mark for Thanksgiving (which is this Thursday in the USA). We are at 479 participants!

We are offering a $50.00 gift certificate to the 500[SUP]th[/SUP] participant. (as we have already done for the 100[SUP]th[/SUP], 200[SUP]th[/SUP], 300[SUP]th[/SUP] and 400[SUP]th[/SUP] )

Thank you!

Some interesting statistics:
51% of the respondents have CF
45% are caregivers
87% are from the USA
11 are from Canada
11 are from UK and northern Ireland
10 from South Africa
5 Australia
4 Ireland
3 Israel
2 Pakistan
1 from each of these countries: Denmark, Bulgaria, Brazil, Mexico, Portugal, Barbados, and Saudi Arabia

Some Background:

I met Patrick Merel PhD of Portable Genomics at the Global Genes Conference in California September 2016.

I was fascinated with his app which allows Discovery, Research, and Profit unique to this patient community.
For the past year, our DOLs have helped to further customize the app for CF.

We will begin with a “pilot” study…which is more close to a pioneer study because an initial group of 20 “Pathfinders” will lead the way, checking out the app for 30 days, some devices (NuvoAir digital spirometer, the Vios Pro Nebulizer and compressor from PARI, and a study of exome sequencing and gut microbiome with Corey Nislow PhD of the University of British Columbia.)

Now, through the current survey, we have proof that many more are interested in this model of collecting data, researching and bringing it to the marketplace!

We have 479 participants so far! We have the lofty goal of reaching 1000!

We look forward to more participants!
If you have not already taken the survey,
Take it Now!
www.cftechnology.org

It take 5-6 minutes! Leave your email if you are interested in hearing more (and want a chance to win the $50.00 Gift Certificate) to th 500th Participant!

Salt and Light,
Imogene