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Understanding the Patient Registry Report (Part 1: Survival Rates)

Posted Aug 27 2008 8:33am 1 Comment

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The Cystic Fibrosis Foundation continually collects data about CF patients who attend CF Specialty Team Clinics. The data is used to see how the quality of life is progressing for CF patients, and how treatment options may be contributing to it. I have written a series of articles in order to help you understand what the 2005 Patient Registry Report is telling us.

Although each article is intended to be a summary description, you can find the complete report on the CFF website.

Understanding the CFF 2005 Patient Registry Report

Part I: Survival Rates

Survival Rates are improving

Between 1985 and 2005, the median predicted survival age improved by nearly 10 years. This means that children born with CF in 1985 were expected to live to their mid-twenties. Children with CF born in 2005 are predicted to survive beyond 36 years.

Because this is merely a predicted survival age based on data plotted on a graph, it may or may not apply to a person’s particular presentation of CF. There are still many children with CF who die in infancy. There are also adults who have surpassed the age that was predicted for them 30 years ago. Theses are the extremes. Between the two lies the median predicted survival age, which is a generalization for a particular generation.

What does this mean for someone born before 1985? A person’s predicted survival age is not a set in stone number. It is merely a prediction. As more treatment options become available to CFers, their survival depends largely on the progression of lung disease, which bacteria they become colonized with, and perhaps, even which mutation they have. The combination of those factors is different for everyone; it is important not to view the predicted age as a magic number that a person with CF (pwCF) may or may not reach.

Interesting fact: the oldest CF patient included in the registry report is a whopping 74 years old!

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Abacus International would like to thank Lauren for her post on 'understanding the patient registry report'.

At Abacus International we are proud to specialise in Patient Registry & Audit software solutions which can help to assist in the following ways;

  • Inform clinical and policy decision-making
  • Fill the evidence gaps in preparation for HTA or HE modelling
  • Assess clinical outcomes: effectiveness and safety
  • Assess economic outcomes
  • Support for patient access or risk share schemes
  • Provide evidence in subgroups not studied in trials
  • Explore humanistic outcomes, including health-related quality of life & other patient-reported outcomes
  • Observe the natural course of a disease
  • Understand practice patterns/pathways and variations in them
  • Examine associations between care and outcomes


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