Ms Suzanne McCormack:

On the registry aspect, it is a good example of where health records and data are being used well for specific diseases. We have good registries for cystic fibrosis and the National Cancer Registry. We run one for interstitial lung disease, ILD. There are many more smaller ones, which are very powerful. The capacity to link those to other data sets is a missed opportunity. If that were possible, there is so much more that could be done. We also know from the patients who provide the data for these registries how invested they are. It is not a question of resistance to giving their data, because they are very happy to do it, but they also have expectations around how those data are used and they feel very strongly about that. That comes out again and again in our meetings and through our representatives.