EuroBloodNet European mapping prevalence of PVRL

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EuroBloodNet pede contributo para caracterização dos linfomas primários vitro-retinianos.

Dear Colleagues,

Primary vitreo-retinal lymphomas (PVRL) is a rare subgroup of primary central nervous system lymphomas (PCNSL). The intraocular compartment of the eye can also be affected either at diagnosis or during the course of the PCNSL. The diagnosis, treatment and monitoring of intraocular lymphoma can be very challenging.

We aim to conduct a European mapping exercise to better know the prevalence of PVRL and intraocular involvement of PCNSL, and how these lymphomas are diagnosed,

treated and monitored in “real life”. These data will allow to assess, within the European Reference Network on Rare Hematological Diseases (ERN-EuroBloodNet), the necessity of the establishment of a European task force for epidemiological surveillance and the establishment of European guidelines, bringing together different specialists: hematologists, neurologists and ophthalmologists.

As starting point, we have prepared a European mapping exercise to identify the state of the art of the management of these disorders across Europe.

If you are willing to be updated on the results of the analysis and on other related activities on the field, please provide your contact details, alternatively you can answer anonymously.

We would really appreciate that you collaborate to this European mapping and forward it to your colleagues implicated in the management of intraocular lymphomas, within or outside your center, it only will take you few minutes!

 

­­­Link will be accessible until 31st July https://forms.gle/EEhCiZcj2e6M2sfHA

Thank you for your precious collaboration.