Association for Multiple Endocrine Neoplasia Disorders

AMEND provides the opportunity for patients with MEN and related endocrine conditions to be involved in a variety of research projects.  We do this by offering ourselves as a link between researchers and patients.

Current Research Involvement Opportunities

To ensure that you are kept up-to-date with opportunities as they arise, please complete the AMEND Research Registry form ( document Research Registry Application (97 KB) ):

NEW! Patient Views on the Regulation of Medicines – How should we weigh the risks and benefits? And who should do so? As part of a European research study, Genetic Alliance UK and researchers at the University of South Wales want to understand how patients perceive the risks and benefits of medicines. The work is important to ensure that patient views are valued in the regulation of new medicines. If you are 18 or older, and you are a patient or a carer, you can help us by completing a short online survey. The survey includes questions about your experience with medicines, your view of the risks and benefits associated with medicines, and how you think medicines should be regulated. The survey is available in several different languages. To complete the survey now please click on/go to one of the links below:

To complete the survey in English: https://www.survey.glam.ac.uk/englishsurvey

Répondre à l’enquête en français : https://www.survey.glam.ac.uk/frenchsurvey

Om deel te nemen aan de enquête in het Nederlands klik  hier: https://www.survey.glam.ac.uk/dutchsurvey

Para completar la encuesta en español: https://www.survey.glam.ac.uk/spanishsurvey

Pentru a completa chestionarul în limba română: https://www.survey.glam.ac.uk/romaniansurvey

Umfrage auf Deutsch durchführen: https://www.survey.glam.ac.uk/germansurvey

Per compilare il questionario in italiano: https://www.survey.glam.ac.uk/italiansurvey

Wypełnij ankietę w języku polskim: https://www.survey.glam.ac.uk/polishsurvey

Your individual answers will be confidential, and you will remain anonymous (we do not ask you for your name). We will share the overall survey findings with other patient groups and relevant decision makers, such as regulators. If you require any further information about the research or you would like the survey in a different format, please contact your local patient organisation or one of the researchers at the University of South Wales in the UK (This email address is being protected from spambots. You need JavaScript enabled to view it.).

NIH Clinical Trial: (May 2013) for recurrent medullary thyroid cancer.  For more information, please visit the Clinical Trials webpage.  Status RECRUITING

Thyroid Cancer Forum - UK: Medullary Thyroid Cancer Research Registry.  Patients can elect to register with this independent group of researchers with a special interest in Thyroid Cancer (working in the NHS).  For more information, visit our webpage.  Status RECRUITING

Genetics of Endocrine Neoplasias Registry (GENR): This Registry aims to collect medical and family history information on people all over the world who have rare endocrine conditions, including sufferers and first degree relatives with MEN, SDHx or VHL.  Led by the University of Texas MD Anderson Cancer Center.  For more information, visit our webpage. Status RECRUITING.

King's College London NIHR Research Study; Talking to Children About Genetic Conditions (UK): This research project launched on 1st September 2013. The project works collaboratively with families (parents, children and young people) with an inherited genetic condition to develop an intervention that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting their family and its risks. We received a large number of expressions of interest from families wanting to take part in the study. As a result of the discussions about families involvement we have extended the number of focus groups to include one a group where parents haven't spoken to their children can help us to develop the intervention. This focus group will be held on 23rd November 2013. If you would like more information about our research or to express your or your interest in taking part in the focus group above please contact the research team directly: Emma Rowland, James Clerk Maxwell Building, King’s College London, 57 Waterloo Road, London, SE1 8WA.  Telephone 0207 848 3650 Email: This email address is being protected from spambots. You need JavaScript enabled to view it..  Status RECRUITING

Patient Experience of Emergency Steroid Treatment: Addison's Disease Self-Help Group (ADSHG).  An online questionnaire which should take no more than 10-15 minutes to complete and which aims to improve the provision of emergency treatment for steroid dependent patients in the UK and Eire.  Find the survey hereStatus OPEN

 

Previous Research Project Involvement

Patient Experience Survey for Highly Specialised Services - Survey Design: The Picker Institute Europe on behalf of the NHS National Specialised Commissioning Team.  Autumn 2011; status COMPLETE.  Click here to read the final report.  NB: MEN and AMEND are not mentioned in the final report since our members were involved in the initial survey design phase rather than the survey itself.

Patient Opinion on MEN1 Genetic Testing Age: MD Anderson Cancer Center, USA. 2012; Status COMPLETE.  AMEND Research Registry patients with MEN1 participated in this study.  Further information on the results of this study coming soon.

Categorisation of Thyroid Cancer by the NHS in the UK: Butterfly Thyroid Cancer Trust (BTCT).  A short online survey of patient opinion to help encourage the correct categorisation of Thyroid Cancer separately from Head and Neck cancers.

Genetics of Medullary Thyroid Cancer (MTC): University of Birmingham, UK.  2011-2012; Status ONGOING.  This study is investigating the possible genetic causes of MTC in patients without a known RET mutation.  AMEND was delighted to help fill the pilot study with patient volunteers from our Research Registry.  News on this study will be available to view at a later date.

Researcher Feedback:

"Recruiting patinets to research trials is always a challenging process. This is even more challenging when researching rare diseases such as MTC… Innovations such as the AMEND Research Registry at AMEND have allowed patients to put themselves forward to be involved in research and provided a direct link between researchers and patients. In our project this has helped recruit more people and in a much faster timeframe than we could have hoped using traditional methods."