Cystic fibrosis registries: behind the headlines

A study in BMJ Thorax has revealed that children and young people with cystic fibrosis in the UK  have poorer lung function than their peers in the US. Here Rebecca Cosgriff, Registry Lead at the Cystic Fibrosis Trust, explains why the study illustrates the power of clinical registries and collaborative working.

Today saw the publication of an important collaboration between researchers, which used cystic fibrosis (CF) registry data from both the UK and the USA. This marks a milestone in the increasing usefulness of patient healthcare registries.

There are cystic fibrosis registries running all over the world; including Europe, Australia and the United States. The UK CF Registry is funded and managed by the Cystic Fibrosis Trust; an indispensable research and quality improvement resource made possible by the generosity of donors to the charity.

All of these registries collect data on people with cystic fibrosis, tracking their care and associated health outcomes. However, because the healthcare system of each country is different, there is inevitable variation in the type of data held by each registry, as well as how it is collected. This UK and US data comparison marks the most comprehensive attempt to-date to meaningfully compare two different CF datasets. Complicated statistical methods and clinical expertise were needed to ensure that, as far as possible, this research compared apples with apples, not apples with pears!

Now that these methods have been worked out, we can start to detect differences between patient characteristics, models of care, and clinical outcomes. For me, the important part of this paper is not the fact that there is a three per cent difference in average FEV1% predicted between the US and the UK. Rather, it is remarkable that we now know that this difference exists, and can start to understand why that might be the case.

This demonstrates the power of clinical registries, and collaborative working, to influence medical practices for the better; enabling healthcare providers in the NHS to strive for excellence compared to their counterparts both nationally and, now, globally.