Cystic Fibrosis (CF) is one of the most common genetic (inherited) diseases in America. It is also one of the most serious. It mainly affects the lungs and the digestive systems in the body, causing breathing problems and problems digesting foods. It is a chronic disease that currently has no cure.
The CF Center at Stanford is an integrated disease management program that follows patients from diagnosis through adulthood.
With the current longer life expectancy for patients with Cystic Fibrosis, our clinic population includes patients of all ages. More than half the patients followed by the Stanford CF Center are adults aged 18 years or older.
Survey Study for any adult CF Patient or Parents of CF Patients
Invitation to Participate in Stanford University Research Survey
Study: Decision-making in Preimplantation Genetic Diagnosis led by Stanford University genetic counseling student Kelly Miller
As you know, families at-risk for cystic fibrosis face challenging circumstances and decisions regarding reproductive options and family planning. Preimplantation genetic diagnosis (PGD), a technique used with in-vitro fertilization to screen embryos and reduce the chance of having a child affected with a genetic condition, is one option for families.
If you are at least 18 years of age and at-risk to pass on cystic fibrosis, you are invited to complete a short, online survey on patient opinions and decision-making regarding PGD. You will be asked to read a brief description of PGD and answer a short series of questions about your opinions and perceptions of this screening (approximately 15 minutes). You do NOT need to have used PGD in order to participate in this study. You will not be asked to give any identifying information in this survey, and all information will be completely anonymous and confidential. If you are interested in participating in this study, please follow the link below. You may only complete this survey once.
You will not be compensated for your participation in this study; however, we would appreciate your input and responses to help us better understand the decisions individuals make regarding preimplantation genetic diagnosis.
Link to Survey: http://tinyurl.com/stanfordgc-pgd
If you have any questions about this study, please contact Kelly Miller at firstname.lastname@example.org or by phone at 650-724-7190 x1. For participants’ rights questions, contact 1-866-680-2906.
2014 Caregiver of the Year
Dr. Carlos Milla
CF Center Director at
Lucile Packard Children's Hospital Stanford
Dr. Carlos Milla, Director of the Pediatric Cystic Fibrosis Center at Lucile Packard Children’s Hospital Stanford was honored as CFRI's Caregiver of the Year at their spectacular Wine for a Cure event on October 19th. CFRI recognized Dr. Milla for the exceptional care he provides to his patients, his active involvement in CF-related clinical trials, his support of family-centered care in the CF Center, and his expansion of care and support to the Spanish-speaking CF community. Congratulations to Dr. Milla!
300 Pasteur Drive, 1st Floor, A175
For New Appointments, call CF Coordinator:
Adult routine appointments
Please call: (650)736-5400
News from the Adult Clinic
Letter from Stanford Adult Team regarding ORKAMBI More
July 13, 2015
As you may already know, Vertex Pharmaceuticals Incorporated has announced that ORKAMBI has been approved by the US Food and Drug Administration.
ORKAMBI is the newest prescription medication used for the treatment of Cystic Fibrosis patients age 12 years and older and is targeted towards those who have two copies of the F508del mutation in their CFTR gene. This medication is a combination of Ivacaftor and lumacaftor, and is dispensed in pill form.
The Stanford Adult CF Team is excited about the availability this medication which has shown good promise in decreasing CF exacerbations, and increase in lung function.
We are working now to determine those of our adult patients who qualify to receive ORKAMBI. We will be happy to discuss this with you at your next clinic visit.
Be advised, if you are eligible for ORKAMBI, you will be required to have a baseline Liver Function test, as well as baseline Spirometry prior to start of drug. All insurance companies have advised us we will need to submit proof of your genetic mutation, and may in some cases; also require results of your Sweat Chloride. We recognize that for some of you, you may no longer have copies of this, and we are prepared to schedule a repeat Sweat Chloride and/or Genetic Mutation for you if necessary.
Please be patient with us as we work diligently to determine your eligibility for ORKAMBI, and we appreciate your patience as we move forward on this process together.
The Stanford Adult Cystic Fibrosis Team
770 Welch Road, Suite 380, 3rd floor
Monday, Tuesday, Wednesday, Friday
For new Pediatric Patients
call: Erica (650)498-2655
Pediatric routine appointments
Please call: (650)724-4788
Bone Density (DEXA) (650)723-6855
PFT (full PFT's) (650) 497-8655
Cystic Fibrosis Research
Research is being conducted on the cause, biological mechanisms, new and better form of therapy and, ultimately, the cure for CF is an important part of our CF Center activities. You can be an important part of that research!
SAVE THE DATE
CF Education Day
March 12th, 2016