Arrivée 134 - November 2016

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THIS & THAT

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Free “MOTs” for older members!

e have been contacted by the National Amyloidosis Centre (NAC) at The Royal Free Hospital, London. A research team at the NAC is carrying out a medical study into one form of the disease Amyloidosis. This is regarded as a rare disease, one that has many forms, but all of which involve the deposition of amyloid protein in parts of the body. It can be genetic or occur spontaneously. It is a disease that is notoriously

difficult to diagnose. The NAC is a world leader in the development of diagnostic methods and treatments. One form of the disease known as ATTR Amyloidosis was, as you will see from the information sent by the NAC, believed to be very rare. The research team is hoping to recruit healthy and active male volunteers who are aged over 80 in order to identify if the disease is more prevelent than current data suggests. Cyclists are well known

A DPD scan showing ATTR cardiac amyloid. The arrow points to the uptake of DPD in the heart.

for their levels of health and fitness in old age and are potentially an excellent group from which to recruit volunteers. If any member, or any of their friends, meets the criteria and is interested in supporting a valuable piece of medical research in one of the foremost centres of its kind, they are invited to make contact with the the NAC using the details provided below.

A fused CT/SPECT image also showing DPD uptake by amyloid deposits in the heart. (from Updates in Cardiac Amyloidosis: A Review; Banypersad S et al; J Am Heart Assoc 2012)

John Plant

DPD Scanner

National Amyloidosis Centre Royal Free Hospital Pond Street London NW3 2QG Tel: 020 7794 0500

Are you male, over 80 years old, and interested in taking part in medical research? We would like to invite men aged over 80, with no known heart disease to take part in our research study at the National Amyloidosis Centre in the Royal Free Hospital, London.

What is the purpose of the study?

The purpose of the study is to scan the hearts of healthy men aged over 80, to look for abnormal protein deposits that occur in a condition called ATTR amyloidosis. This condition mainly affects men after age 70 and until recently it was believed to be very rare, diagnosed in only about 100 people in the UK each year. But post mortem studies have found ATTR amyloid deposits in the hearts of 10-20% of deceased elderly men and evidence from echocardiography studies suggests that ATTR amyloid deposition in the heart may be much more common than was previously believed. This study aims to investigate the true prevalence and potential health consequences of ATTR amyloid deposition in the hearts of elderly men.

What does the study involve?

All study participants will undergo a specialist heart scan at the National Amyloidosis Centre and some participants will undergo a few additional tests. The scan is safe, painless and non-invasive, apart from receiving a single injection into the vein. Detailed information and explanation of the proposed scan will be provided to enable fully informed consent. The doctors at the NAC will notify your GP of any abnormal results and give advice on further management. You will receive £50 compensation for your time and effort in taking part in the study and travel costs to and from the National Amyloidosis Centre at the Royal Free Hospital will be refunded.

For more information, please contact the researchers: Ms Thirusha Lane Dr Julian Gillmore

t.lane@ucl.ac.uk j.gillmore@ucl.ac.uk

020 7433 2759 020 7433 2726

The study is being sponsored by University College London, and has been approved by NRES Committee South Central – Hampshire B ethics committee (REC ref. no. 13/SC/0643). All information will be treated in the strictest confidence.

www.aukweb.net Arrivée Autumn 2016 No. 134

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