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.
If you are interested in getting involved in Paget's research you may find the following information and links useful.
Dr Amelia Moore, Research Fellow at King’s College London, is researching a new imaging study in Paget’s Disease at Guy’s Hospital, London. She is looking for 25 male and female patients aged over 50 years old with active Paget’s disease to take part in a 4-month study that will investigate whether we can directly detect the bone cells called osteoclasts which are involved in Paget’s disease, using a bone scan tracer called 99mTc-maraciclatide. To be suitable for the study, we require patients who are scheduled to receive the intravenous bisphosphonate treatment, Zoledronate, must be willing to have two routine bone scans at Guy’s Hospital, as well as attend for up to 5 additional study visits, and live within a 25 mile radius of London. Please contact the Paget’s Association on 0161 799 4646 if you are interested in learning more about this study.
The ZiPP study
Zoledronate in the Prevention of Paget’s is a clinical research study being run by the Edinburgh Clinical Trials Unit. Recruitment for the study has now closed.
When we have new information regarding specific research trials we will post it here, so do visit this page again for updates.
THE NHS NATIONAL INSTITUTE FOR HEALTH RESEARCH: Clinical Research Network. The Clinical Research Network: Metabolic and Endocrine theme supports the set up 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 using the link here: http://bit.ly/14OcEbz
Other useful links:
Search for clinical studies open in the UK via the UK Clinical Trial Gateway – www.ukctg.nihr.ac.uk/trials.aspx
Find a Clinical Research Study - search for studies recruiting patients in your local area: www.crn.nihr.ac.uk
The ‘OK to Ask’ campaign aims to help the public engage with healthcare professionals about research: www.nihr.ac.uk
INVOLVE has an involvement in research jargon buster at: www.invo.org.uk
People in Research is a resource where researchers can advertise opportunities to get involved in research: www.peopleinresearch.org
NIHR Journals Library is an open access library with the results of research: www.journalslibrary.nihr.ac.uk
InvoDIRECT is an online directory of networks, groups and organisations that support active public involvement in research: www.invo.org.uk
National Association for Patient Participation: www.napp.org.uk