Listed below are current research projects related to pituitary conditions.
Pituitary Foundation social research projects
We are currently working with Dr Sofia Llahana from UCLH, to conduct a National Pituitary Survey during 2014. Further details to follow.
Independent/external research projects
Helping young people talk with doctors and nurses By Jennifer Downing & Prof. Peter Callery
The COMMEND YOU study is to trying to find ways to help healthcare professionals, young people and parents (if present) communicate. We are starting to test the toolkit developed with the help of young people with endocrine conditions, including pituitary conditions, and parents as well as doctors and nurses. The toolkit is called 'Explain' and is available on its own website www.explain.me.uk. Explain is designed for use at home as well as in clinics. The site has diagrams to help explain Hypopituitarism and other endocrine conditions. There is also information about coming to clinic, keeping healthy and a glossary of terms. Much of the text is written as a response to questions and is followed by example questions patients may want to ask healthcare professionals. Health promotion messages and links to other information sites are also provided.
A 'Your Issues/Take Home Messages' sheet can be downloaded to help young people tell doctors and nurses what they want to talk or ask about when they come to the clinic.
Signing up creates your own private account to record take home messages and other notes for future reference. You can also keep a diary and update a personal growth chart with your height and weight.
We are testing the Explain toolkit in the COMMEND YOU study. Previously we analysed recordings of consultations and interviews with young people, parents, doctors and nurses. We then developed the Explain toolkit with a group of young people and their parents. In this stage participants will test the Explain toolkit:
- Before a consultation: the 'Your Issues' sheet will be sent to help young people prepare points and questions to talk about in clinic. We will also tell them about the website. After the clinic appointment patients and parents will watch back their consultation and talk to a researcher. They will be asked to discuss if and how the form and the website were used in preparation for the consultation.
- In the consultation: consultations will be recorded and watched back with patients and their parents, including how the website and 'Your Issues/Take Home Messages' sheet was used.
- Post-consultation. Participants will receive a brief phone call two weeks after their consultation to ask if and how they have used any of the tools since the consultation. Any benefits, perceived improvements or outstanding communication needs will be discussed.
- Patients in the COMMEND YOU study will also be offered a dvd recording of their consultation. We noticed that people could find it useful to watch the recording of their consultation during interviews. So we’re trying this out to see if it can be helpful as a reminder and to help plan how to talk with doctors and nurses.
Everyone can see the toolkit and set up a private account at www.explain.me.uk Please let us know what you think either by submitting feedback through the site or directly to us at Jennifer.email@example.com
- Subcutaneous pulsatile glucocorticoid replacement therapy research
Georgina M. Russell*, Claire Durant*, Alia Ataya†, Chrysoula Papastathi*, Ragini Bhake*, Wolfram Woltersdorf‡ and Stafford Lightman*
*Henry Wellcome Laboratories for Integrative Neurosciences and Endocrinology, Dorothy Hodgkin Building, University of Bristol,†School of experimental psychology, University of Bristol, and ‡Department of Clinical Biochemistry, UH Bristol, Bristol, UK
NIHR CRN research
The Clinical Research Network: Metabolic and Endocrine theme supports the set up and delivery of clinical research within the NHS. We work alongside clinicians, commercial companies and patient organisations to provide an infrastructure to deliver research trials.
Research is important to make new advances available to patients and to improve the standard of care, in the areas of prevention, screening and diagnosis, treatment and quality of life.
If you would like more information on the work of the NIHR Clinical Research Network for Metabolic and Endocrine disorders, you can access our website using the link below:
UK Clinical Trial Gateway – search for clinical studies open in the UK: http://www.ukctg.nihr.ac.uk/trials.aspx
Find a Clinical Research Study - search for studies recruiting patients in your local area:
The ‘OK to Ask’ campaign aims to help the public engage with healthcare professionals about research: http://www.nihr.ac.uk/newsroom/the-nihr-'ok-to-ask'-campaign-encourages-patients-to-take-part-in-research/1192
INVOLVE has an involvement in research jargon buster:
People in Research is a resource where researchers can advertise opportunities to get involved in research: www.peopleinresearch.org
NIHR JournalsLibrary is an open access library with the results of research: http://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/find-out-more/invodirect
National Association for Patient Participation: www.napp.org.uk