Survey about Mutations

Imogene

Administrator
Members of CysticFibrosis.com,
Here, at cysticfibrosis.com, you come to tell your stories. Since 1996, the stories have been about diagnosis, treatments, and environment. You have come here to depend on friend to help you with adherence and daily living.
A newer addition to the story is your genetic composition, and in particular, your CF mutations.
Worldwide, over 2500 of you have entered your mutations into your profile. We have over 100 unique CF mutations represented. Many of you are already self-grouping by mutations.
We know medications can be developed based on your mutations. Vertex Kalydeco for people ages 6 and older with G551D mutation of CF and Ataluren, a potential new drug that targets a particular type of mutation known as a nonsense mutation.
Scientists and researchers are increasingly interested in studying patient groups like ours in order to find connections that may lead to better treatments. Consequently, the cost of sequencing your full genome is coming down.
We are providing these exciting opportunities:

  1. Our forum software will allow you to create guilds or groups based on your mutations.
  2. We are collaborating with DNA Guide, an award winning software company, which enables you to map your genetic data and participate in managing access to it.

    You alone will own this information and consequently be able to share it with others, including your physician and researchers as you wish. Your genome may even become your unique financial asset for research. All of this will be structured around HIPAA and privacy norms.
Please take this short survey which includes a few starter questions on environment, treatment, and mutations and if you are interested in the joining a guild, we will send you the next steps.
http://www.surveygizmo.com/s3/1129460/Genetics-US
Salt and Light!
jeanne_2.jpg

Jeanne Barnett
 

lilmac1177

New member
i, myself, am still concerned about putting my genome out there as i came across this article "No Privacy Guarantee for Genomic Data":

http://www.medpagetoday.com/Genetics/GeneticTesting/
 
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