A number of inherited conditions can predispose to kidney tumours including von Hippel-Lindau disease, Birt-Hogg-Dube syndrome, hereditary leiomyomatosis and renal cell carcinoma syndrome (HLRCC) and succinate dehydrogenase subunit gene mutations. To increase knowledge of the features of inherited renal cancer syndromes a national registry has been established as part of the National Registry of Rare Kidney Diseases (RaDaR).
Taking part in the Inherited Renal Cancer syndrome RaDaR Registry will help better our understanding of these rare conditions and identify people who may benefit from future clinical trials. Patient data is held securely by the UK Renal Registry, and you can find out more at the website RareRenal.org.
Patient benefits of joining RaDaR
- Ability to be contacted about future potential research studies or patient information events
- Contribute to new knowledge about your condition
- Help to expand expert knowledge of rare inherited cancer syndromes
How to register
For further details on how to participate please contact the Study Coordinator Katerina Stroud on phone: 01223 746716 or email: Katerina.firstname.lastname@example.org or the Chief Investigator Professor Eamonn Maher (email@example.com).
To register your interest in participating and to obtain a study recruitment pack (containing an invitation letter, information about the study, a consent form, a family history questionnaire and a pre-paid envelope to return the signed consent form) please email your details to firstname.lastname@example.org