NET Appendix
Research type
Research Study
Full title
Management and outcome of neuroendocrine tumors of the appendix in children; a multicenter historical cohort study
IRAS ID
333267
Contact name
Nigel Hall
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Neuroendocrine tumours (NET) of the appendix are rare in paediatrics, yet they are one of the most common tumours of the intestine in children. They are usually found incidentally after they manifest similarly to appendicitis (inflammation of the appendix). There is a lack of children-specific guidelines in NETs management, as not enough data is available on the outcomes of care.
In this study, we aim to investigate the outcomes of children who were proven to have an appendix NET. The data will be collected from all patients below 18 years of age with a proven neuroendocrine tumor (NET) presenting to participating hospitals across the world between 1990 and 2020.
After the screening of records and identification of eligible patients, an information letter will be sent to the selected patient/carer with details of the research study. Four weeks late, the designated physician will call the parent/patient to discuss participation in the study; the phone call will take about 5 minutes. During the conversation, the parent/patient can make your wish clear to participate or not participate. If the parent/participant decides to participate, the treating physician will ask some additional questions necessary for the study. Thereafter, we will send participants a digital questionnaire via e-mail. This questionnaire focuses more in-depth on quality-of-life-related matters to gain better insight into relevant and important matters from a patient’s point of view.
Primarily, we aim to find out recurrence (the tumour representing) and survival without pathology. Other outcomes include the overall survival rate, complications related to primary and secondary treatment (major or minor), hospital re-admission for complications related to NET treatment, length of hospital stay, number of imaging studies, number of outpatient check-ups, health-related Quality of Life at follow-up for this study.
REC name
South Central - Oxford B Research Ethics Committee
REC reference
24/SC/0254
Date of REC Opinion
3 Oct 2024
REC opinion
Further Information Favourable Opinion