Sixty years ago, before doctors knew very much about cystic fibrosis, most children with the disease died before school age. Today people with the disorder are living well into their 30s. Today we know that cystic fibrosis is a genetic disorder and we know what causes the symptoms.
What we don’t have is a cure. Prolonging the life of cystic fibrosis patients is largely based on improvement of care, including medicines that alleviate some manifestations of the disease and physical therapy to keep the lungs clear. What works for one patient doesn’t always work as well for the next.
An effective tool in the improvement of care for cystic fibrosis patients has been the establishment of a national registry of patients. The registry, which is managed by the Cystic Fibrosis Foundation, currently collects and stores patient records from more than 100 cystic fibrosis treatment centers across the country. The pooled data has proven very useful in learning what works best for which kinds of patients, and why. It’s like having the collective experience of thousands of doctors right at your fingertips.
The concept of a using a national registry of patients to improve patient care has proven so successful that other patient groups are copying it.
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