The Cystic Fibrosis Registry is an extensive data base of clinical information on patient with Cystic Fibrosis who are followed in accredited US Cystic Fibrosis Centers and who consent to participate.  The Cystic Fibrosis Registry provides valuable clinical information on the characteristics of Cystic Fibrosis patients as well as allows the individual practioner to easily track an individual patient clinical course over time.  In 2005 the Cystic Fibrosis Foundation began encouraging individual centers to share their registry data with the patients followed in their Center. 

The data is presented in bar graph format with our center highlighted in red and the national average highlighted in green.  There are also graphs of data trends over the last several years.  The blue lines represent the ten “best” centers and our center is represented by the red line.

Nutrition Data Nutrition is very important in Cystic Fibrosis and is associated with survival.  From the time of diagnosis weight and height are followed at every clinic visit.  Growth curves are used for pediatric patients and Body Mass Index (BMI) is followed in older patients.  BMI is a ratio of weight (kg) to height (cm).  We aim for “normal” growth during childhood and a BMI greater than 20 during adulthood. CF Vitamin Website Newsletter

Lung Function Data Lung function is also followed closely in Cystic Fibrosis.   Patients over 6 years old perform lung function tests at every clinic visit.  Forced expiratory volume in one second (FEV1) is followed most closely.  Lung function, like weight, is associated with survival.  The higher the FEV1, the better the patients survival.