March 1st, 2024 – A meeting of the “Inherited Renal Cancer Syndromes” Rare Disease Group of the RaDaR Registry was held recently and attended by RDG group members including Prof Eamonn Maher (RDG Lead), Mr Rupesh Bhatt, Dr Lucas Foggensteiner, Mr Graham Lovitt (VHL/UK Ireland), Prof Marc Tischkowitz and Dr Emma Woodward. The group heard that recruitment to the registry had started in Cambridge and has now progressed to other centres. To date, 311 participants have been recruited with a variety of conditions including von Hippel-Lindau disease, PTEN hamartoma syndrome, Birt-Hogg-Dube syndrome, HLRCC and others. Plans to complete recruitment at currently participating centres and to add new centres were discussed.
Anyone wishing to participate can contact Study Coordinator Katerina Stroud on phone: 01223 746716 or email: Katerina.stroud2@nhs.net or the Chief Investigator Professor Eamonn Maher eamonn.maher@nhs.net or add-tr.humgendis@nhs.net
