University of Essex are looking for volunteers with Adult-Onset Craniopharyngioma to take part in an online survey.

This University of Essex study is aimed at understanding how the diagnosis affects lives outside of a clinic.

The study are looking for people who:

  • People with confirmed Adult-Onset Craniopharyngioma
  • are 18+ years old

You cannot take part in this survey if:

  • you cannot confirm a diagnosis of Adult-Onset Craniopharyngioma
  • are under 18 years old
  • Those with sufficiently poor eyesight that they could not complete an online survey.

They will ask for evidence of your diagnosis and be asked to complete a questionnaire about your social life and physical well-being. The questions are of a rating scale questionnaire, they will be asking you to rate the extent of your agreement with each of their statements. After reading a detailed study information sheet and providing informed consent, participants will be screened to ensure they meet the inclusion criteria. Some basic demographic information will be collected (such as current age, age at diagnosis, sex etc.), before completing a number of gold-standard, well-validated psychological questionnaires.

As the study is online, you can complete it at any time and is stated to take approximately one hour.

Participants who pass the screening questions and complete the survey will receive a £10 amazon voucher.

If you have any questions about the study please contact Ellie Dadds: [email protected].

You can take part in the study here.