A prospective Europe-wide Study of Duodenal Disease in MUTYH-Associated Adenomatous Polyposis (MAP)
MUTYH-Associated Adenomatous Polyposis (MAP) / Posted 4 years ago
We will undertake a prospective study of adult MAP patients with confirmed bi-allelic mutations across collaborating European centres. Data from upper GI surveillance procedures including endoscopy and histopathology findings will be collated as an ongoing process by the Institute of Medical Genetics, Cardiff, UK where it will entered into a database and stored safely. We will also collect prospectively data on other incident cancers diagnosed in these patients. All causes of death and all dates of death will be recorded. Recruitment of patients from the European centres and consent will be obtained using local procedures, and ethical approval will be obtained in each country. As MAP is a rare disorder, and the interval between surveillance procedures may be as much as 5 years, this study is planned to take place over 20 years.
Inclusion Criteria :
- Adult (18 years or more of age)
- patients with genotype confirmed MUTYH-associated adenomatous polyposis.
- Exclusion Criteria : Inability to give informed consent
- Study start date : 31/01/2012
- Study end date : 31/12/2031
- Wales-Based Study Contact : Please speak to your clinician
- Principal Investigator : Prof Julian Sampson