GENES AND THE KIDNEY IN TUBEROUS SCLEROSIS: RESEARCH PARTICIPANTS SOUGHT

Hello,

We are looking for people who have polycystic kidney disease and tuberous sclerosis to take part in a new study led by Professor Sampson at Cardiff University.

We would like as many people as possible with tuberous sclerosis and polycystic kidney disease to take part, no matter where you live, and so whether you are affected yourself or looking after someone with the condition, we would be very pleased to hear from you.

The study is very simple and does not involve any face-to-face meetings. All it would involve is a short questionnaire consisting of 10 questions, consent to review medical records, and for some participants, we may ask for a blood sample to check kidney function or complete genetic analysis if this has not been done already.

The purpose of the study is to find out how the kidneys of people with this condition are affected as they get older. This will help doctors, patients and their families to understand the condition more and to know what to expect in the future.

If you are interested in taking part or have any questions, please get in touch and we will arrange to send you further information about the study and how to take part.

You can contact me until the 4th August on 02920 744947 or email Madeleine.Heeley@wales.nhs.uk (after 4th August, please call Hannah on 02920 744865 or email listerhr@Cardiff.ac.uk).

Many thanks for reading this.

With best wishes,

Madeleine

Dr Madeleine Heeley
Specialist Registrar in Medical Genetics to
Professor Julian Sampson, Honorary Consultant in Medical Genetics