Association for Multiple Endocrine Neoplasia Disorders

AMEND is determined to encourage research into MEN and its associated endocrine tumours, and therefore maintains its own confidential database (Research Registry) of patient members of AMEND who wish to be involved in future research; statistical and/or clinical.

AMEND complies with the UK Data Protection Act 1998 with regard to its Registry and all its operations.

Patients interested in being involved in future research can register their contact details and brief medical history with AMEND using our  document Research Registry Application Form (99.5 kB) .

  • Researchers WILL NOT be put in touch directly with patients without the patients' consent
  • Researchers DO NOT have direct access to the AMEND Research Registry database

Registered patients may only be contacted via AMEND to determine their willingness to be involved with a particular research project.

Researchers wishing to use the database should contact AMEND's UK office.

In addition, in the UK, information on cancer patients is recorded in different ways.  pdf Learn more.

Read more about the projects our members have participated in, researchers' feedback and current opportunities for involvement.