RecruitingOBSERVATIONAL

Life Following Excision of Neuroendocrine Tumors

This study, called 'Life Following Excision of Neuroendocrine Tumors', aims to understand the quality of life for people after surgery for a type of cancer called neuroendocrine tumours (NETs). NETs are often considered a long-term condition, and while surgery is important, doctors want to make sure it also improves patients' overall well-being. This research will follow adults having NET surgery in hospitals across North America and Europe. They will ask participants about their physical and mental health before surgery and regularly for up to three years afterwards. By understanding what factors affect quality of life, the study hopes to help doctors make better decisions with patients and provide more personalised care around the world.

At a glance

Status

Recruiting

Sponsor

Sunnybrook Health Sciences Centre

Enrolment target

246

Start

28 Apr 2025

Estimated completion

31 Dec 2028

Neuroendocrine (NE) Tumors Neuroendocrine Tumor GEP Grade 1-3

What is this study about?

Neuroendocrine tumours (NETs) are a unique type of cancer that can grow slowly. Because of this, many people live with NETs for a long time, sometimes seeing it as a chronic or ongoing condition, much like diabetes or heart disease. The main goal of treatment for NETs isn't always to completely cure it, but rather to manage the condition, control its growth, and help you live the best life possible.

Surgery is a very important part of managing NETs. It can help remove tumours and reduce symptoms. However, doctors need to carefully weigh the benefits of surgery against any potential problems or recovery time it might cause. Right now, there isn't a lot of clear information about how surgery for NETs affects a person's everyday life and well-being over the long term. This study aims to fill that gap.

Researchers want to understand how your quality of life — how you feel physically, mentally, and emotionally — changes after NET surgery. They will gather information from many hospitals internationally to get a broad picture. The results will help doctors make more informed decisions with their patients, ensuring treatments not only control the disease but also support a good quality of life. This research could change how NETs are managed globally.

Key takeaways

This study focuses on understanding life after NET surgery.
It aims to improve future care decisions for NET patients.
Participation involves completing health questionnaires over up to three years.
It's for adults having certain types of NET surgery in specific areas.
Your medical treatment will not change by participating.

Who may be eligible?

This study is open to adults aged 18 or older who have been diagnosed with certain types of neuroendocrine tumours (NETs). You would be suitable if your diagnosis is for well-differentiated NETs of grades 1, 2, or 3, confirmed by a biopsy or scans. You also need to be planning to have surgery to remove NETs in your stomach, bowel, or pancreas.

However, you cannot join the study if you have been diagnosed with a different, more aggressive type of neuroendocrine cancer called neuroendocrine carcinoma. Also, if you decide not to have surgery, or if you can't complete questionnaires (for example, if they are not in your local language), you would not be able to take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you been diagnosed with a grade 1, 2, or 3 neuroendocrine tumour (NET)?
Are you planning to have surgery for NETs in your stomach, bowel, or pancreas?
Are you able to complete questionnaires in your local language?

Answer every question to see your result.

What does participation involve?

If you join this study, your involvement will span a maximum of three years after your surgery. You will be asked to complete questionnaires about your quality of life and any symptoms you might have. These questionnaires will be given to you before your surgery, and then again at 6, 12, 24, and 36 months after your surgery. There are no new medications or special treatments involved, as the study focuses on tracking your experience after the standard surgery you would already be having. The researchers will use the information you provide to understand overall patterns, not to give individual medical advice.

Potential risks and benefits

Taking part in this study primarily involves sharing information about your health and well-being through questionnaires. The main benefit is helping to improve understanding of post-surgery life for NET patients, which could lead to better care for others in the future. There are no direct medical benefits to you from participating. Your main risk would be the time and effort required to complete the questionnaires. All information you provide will be kept confidential. You are free to stop participating in the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Sunnybrook Health Sciences Centre
Verified postcode
Toronto, Canada· Recruiting

Common questions

What are Neuroendocrine Tumors (NETs)?

NETs are a type of cancer that can grow slowly. Many people live with them as a long-term condition. This study focuses on how surgery affects life with NETs.

What does 'quality of life' mean in this study?

It means how you feel physically, mentally, and emotionally in your daily life. The study uses questionnaires to understand this after NET surgery.

Will participating change my treatment?

No, this study observes your experience after standard surgery. It won't change the treatment plan your doctors have already made for you.

How long will I need to be involved?

If you join, you will complete questionnaires before surgery and then at 6, 12, 24, and 36 months after surgery, for a total of up to three years of follow-up.

Is my personal information kept private?

Yes, all the information you provide for the study will be treated confidentially and your personal details will be protected.

How to find out more

Jessica Armah, MSc

jessica.armah@sri.utoronto.ca 416-480-6100 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.