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 fro 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. In the August 2020 issue of our Members' Paget's News magazine, our Specialist Paget’s Nurse, Diana Wilkinson, spoke to the lead investigator, Professor Stuart Ralston, about the study and asked him to explain what this new research involves. For full details, please contact Susan Begg via email Susan.Begg@ed.ac.uk or contact our Paget's Nurse Helpline.
Our Chairman, 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.
Does psychological flexibility moderate the efficacy of activity pacing in chronic pain?
This project is about chronic pain (not just in Paget's disease) and aims to study activity pacing, which is an approach to managing chronic pain by adapting one’s planning of activities and activity level. It will investigate the relationship between activity pacing and a set of psychological skills known as ‘psychological flexibility, and whether this relationship affects outcome in the management of chronic pain. It is hoped that better understanding of this relationship may shed light on the most effective way to use activity pacing strategies for people with chronic pain conditions. Download the full details of how to take part here.
How beliefs about pain can influence expectations and learning.
The University of Liverpool is looking for participants who have chronic pain OR are pain-free to take part in an online study. The study is designed to improve our understanding of how beliefs and learning affect expectations about pain. By participating in the study you could help contribute towards better treatment for those experiencing chronic pain symptoms. For full details, please follow this link to their website. or email firstname.lastname@example.org for more information.
- if you are a patient interested in taking part in Paget's research
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.