Get Involved in Research

The Paget's Association encourages and assists research into many aspects of Paget's Disease. Research is important to improve our knowledge and make new advances translate into care, in the areas of prevention, screening and diagnosis, treatment and quality of life. Scroll down for opportunities to take part in research.

Genetic Analysis to Predict the Development of Paget’s Disease (GAPDPD) 

There are opportunities for patients from all over the UK to get involved in a Study into the Genetics of Paget’s Disease as researchers at the Edinburgh Paget’s Association Centre of Excellence (PACE) are leading research, funded by the European Research Council, into the role of genetic factors in Paget’s disease. The Genetic Analysis to Predict the Development of Paget’s Disease (GAPDPD) study is now open to recruitment and aims to determine, by genetic testing, if it is possible to predict the risk of Paget’s disease developing in people who have a family history of the condition.

Who can take part in the GAPDPD Study?
If you have either a parent or a sibling who has been diagnosed with Paget's disease, you are 45 or older, and have not been diagnosed with Paget's yourself, you can take part in the research. 

Why are they doing the study? 
Paget’s disease can run in families. Close relatives of people with Paget’s have a seven times greater risk of developing the disease in later life, than someone in the general population. It is known that it may go undetected for many years and then present at a late stage with complications that are difficult to reverse. The researchers want to be able to avoid that happening in the future.

What’s the aim of the study? 
The researchers want to be able to predict why some people with a family history of Paget’s disease develop the disease and others do not. People who enrol in the study will also be kept under close surveillance for any signs or symptoms of the disease should they occur.

Who can take part? Anyone who is aged 45 years or older with a parent or sibling who has been diagnosed with Paget’s disease can take part. The only exclusion would be if your relative had already been diagnosed with the condition.

Where is the study taking place?
The investigators are planning to perform the study in several sites across the UK and Ireland. You will be given a choice of the site that is most conveinient for you. The study team will be very happy to reimburse any travel and accommodation costs that your relative might incur as a result of taking part in the study. Study sites are open in Edinburgh, Cardiff and London, with Keele, Liverpool and Cambridge due to start soon. Other sites are being set up in Bristol, Dublin, Leicester, Liverpool, Middlesborough and Newcastle.

How do I find out more? If you think you may be interested or would like to find out more, please contact the study team by emailing gapdpd@ed.ac.uk or the Chief Investigator, Professor Stuart Ralston, by emailing stuart.ralston@ed.ac.uk

Our Chair, Professor Stuart Ralston discusses Paget's research in the video below.

The PAIN in PAGET'S Study

For an opportunity to take part in pain research, funded by the Paget's Association, read about the Pain in Paget's study here. You can also watch the video below where Professor Ralston discusses pain and Kathryn Berg explains the study.

CONTACT US

Other useful websites:

THE NHS NATIONAL INSTITUTE FOR HEALTH RESEARCH: Clinical Research Network. The Clinical Research Network: Metabolic and Endocrine theme supports the setup and delivery of clinical research within the NHS working alongside clinicians, commercial companies and patient organisations to provide an infrastructure to deliver research trials. If you would like more information on the work of the NIHR Clinical Research Network for Metabolic and Endocrine disorders, you can access their website here.

Search for clinical studies taking place in the UK via the UK Clinical Trial Gateway - click here for details.

Find a Clinical Research Study - search for studies recruiting patients in your local area - visit the website.

INVOLVE has a research jargon buster - follow this link.

People in Research is a resource where researchers can advertise opportunities to get involved in research - find details here.

NIHR Journals Library is an open-access library with the results of research - follow this link to their website.

INVOLVE is part of the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. Follow this link for more information.

National Association for Patient Participation: follow this link for details.