EORTC CLTF 2018 | PROCLIPI: registry & establishment of a prognostic index for MF and SS

Pro Clippy is a study for mycosis fungoides and Sézary syndrome, and it stands for Prospective Cutaneous Lymphoma International Prognostic Indices, but actually it’s much more than that. So we’ve started collecting data on patients all around the world on mycosis fungoides and Sézary syndrome, trying to work out what are the important factors that affect survival, and how we can improve treatments and outcomes for our patients.
We opened Pro Clippy three years ago, and it’s grown beyond belief. It’s been a tremendous success! It’s a registry for patients with mycosis fungoides and Sézary syndrome but actually, the basis could be used for any cancers and particularly rare cancers, where you really need large collaborations to make interesting or successful research. So sites can enter their data from the World Wide Web. It’s anonymized centrally, and that data can then be analyzed to see what’s important and what affects the patient’s life; quality of life, treatments, survival.
The data it just grows and grows. Already, we’ve got over a thousand patients and each time we look there’s another ten patients added from different sites around the world. Already we’ve got six continents. We’ve got Europe, the US, South America, Africa, Asia, and Australia, and the population just keeps growing, so the data you accrue is really interesting.
We’ve just published our first paper and that’s in the British Journal of Dermatology, on the early stage patients, looking at the age of those patients, finding out that the early stage patients are presenting younger, but they don’t have their disease longer than the advanced stage patients, so the advanced patient seemed to have a more aggressive type of the disease from the onset. But we also found out that many of these patients aren’t getting diagnosed for at least three years, so they suffer a lot before the diagnosis of mycosis fungoides is made.