Cystic Fibrosis Genetic Testing
Cystic fibrosis (CF) is a life-long illness that is usually diagnosed in the first few years of life, and in many states it is diagnosed by newborn screening (including Colorado). The disorder causes problems with breathing and digestion. Cystic fibrosis does not affect intelligence. Cystic fibrosis genetic testing is being offered to couples either prior to conception or during early pregnancy. Many individuals receiving testing may have unanswered questions about their carrier status and future reproductive decisions.
Join us for an informal discussion about cystic fibrosis and what it means to be a carrier.
To help answer questions regarding cystic fibrosis and cystic fibrosis genetics, we are hosting a quarterly web-cast and video conference to discuss cystic fibrosis (CF) genetics. Genetics professionals, and the cystic fibrosis care team at the University of Colorado Denver and The Children's Hospital are working together to give you up to date information about cystic fibrosis and what it means to be a carrier.
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Are you pregnant? Thinking of getting pregnant? Recently pregnant?
Please take our survey to tell us about your experiences in cystic fibrosis genetics.
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OB/GYNs, Midwives, other providers of prenatal care
Please complete our survey to describe your current practices in cystic fibrosis genetic testing.
Join our web-cast to discuss cystic fibrosis (CF) genetics
A web-cast is a meeting conducted on the internet. A person can participate in these web-casts through any internet connection by visiting our website and following the directions. You will view a set of slides and hear the voices of the presenters. You can ask questions by typing them in, similar to a chat room. We will read your question and respond to them during the web-cast.
These web-casts and video conferences do not replace consultation with your physician or other medical professionals. For individualized advice and reproductive decision making, please see your physician or contact a genetic clinic.
Please check back for future webcast dates and times. If you have any questions about accessing a web-cast, please call (720) 777-6181 or e-mail our care team.
If you don’t have access to a computer for the web-cast:
If you aren’t able to access a computer during the times of the web-cast, you can join the web-casts at one of the following Public Health Clinics or other community resources. Identify the location closest to you and contact them prior to the web-cast to confirm your attendance.
Arapahoe County Human Services
Larry Boven
Aurora
303-636-1912
University of Colorado, Colorado Springs
Linda Aaker
Colorado Springs
719-262-3597
Colorado State University
Anthony DeNardo/ Andre Smith
Fort Collins
970-491-6305
San Luis Valley Area Health Education Center
Charlotte Ledonne
Alamosa
719-589-4977
La Plata County
Todd McKane
Durango
970-382-6309
Other Resources
- Cystic Fibrosis Foundation:
Pamphlet: Frequently Asked Questions about Genetic Carrier Testing for Cystic Fibrosis
Phone: (800) FIGHT CF
Website: www.cff.org
- The March of Dimes:
Website: http://www.marchofdimes.com/
- American College of Obstetricians and Gynecologists
(ACOG) brochure titled “Cystic Fibrosis Carrier Testing, The Decision is Yours”
Genetics Clinics
One-on-one counseling for cystic fibrosis carriers is available through genetic counseling services throughout Colorado. Insurance reimbursement may vary by carrier, so please discuss your individual coverage with your healthcare provider and insurance carrier. A few resources for genetic services in the Denver area are listed below.
This project is funded by the Mountain States Genetics Regional Collaborative Center and Genentech, Inc. (makers of Pulmozyme).
