RecruitingOBSERVATIONAL

Mobile Application to Collect PRO Data in NET Patients

This study is exploring how a mobile app can help people living with neuroendocrine tumours (NETs) to keep track of their symptoms and how they're feeling day-to-day. NETs are uncommon cancers, and patients often have several treatments. Currently, we don't have a good way to consistently record how these treatments affect patients' quality of life. Working with patient groups, a special mobile app has been developed for people with NETs. This study will assess if using this app is helpful for both patients and their healthcare team. It's an observational study, meaning you won't be given new treatments, but you'll use the app to record your experiences over a period of up to four years, helping us understand the impact of your existing care.

At a glance

Status

Recruiting

Sponsor

King's College Hospital NHS Trust

Enrolment target

2,000

Start

20 Jul 2020

Estimated completion

01 Jul 2026

Neuroendocrine Neoplasms (Tumours)

What is this study about?

This study is about understanding how people with a type of cancer called neuroendocrine tumours (NETs) experience their treatment and daily life. NETs are a less common form of cancer, and individuals often go through various treatments, which can sometimes come with side effects or complications. Currently, we don't have a clear picture of how these treatments truly affect a patient's symptoms and their overall quality of life over time.

To help with this, we’ve worked closely with a national patient charity and support groups to create a special mobile application. This app is designed to be a helpful tool for patients, allowing them to easily record details about their symptoms, how they're feeling, and even information about their appointments. The main goal of this study is to see if using this mobile app is a practical and useful way for people undergoing treatment for NETs to keep track of their health.

Taking part in this study means you would use the app to regularly record how you're feeling and any symptoms you might have. This information will also help us see if healthcare teams respond differently or more quickly when patients share their experiences through an app. The study doesn't involve any new treatments or invasive procedures; it simply observes how beneficial this digital tool could be for your care. The information you provide will be kept confidential and will help us learn how to better support people with NETs in the future.

Key takeaways

Uses a mobile app to track symptoms and quality of life for NET patients.
Observational study, no new treatments given.
Developed with national patient charities for ease of use.
Aims to see if mobile technology can improve patient care.
Participation involves regular app use from home over up to 4 years.
Helps researchers understand the patient experience of NET treatments.

Who may be eligible?

To be considered for this study, you need to have a confirmed diagnosis of a neuroendocrine tumour (NET) and be planning to receive treatment for it. You must be at least 18 years old and expected to live for at least six more months.

It's important that you are able to understand the information about the study and give your consent to take part. You also need to be able to understand the language used in the questionnaires within the app.

However, you wouldn't be able to join if you have other types of cancer for which you are currently receiving treatment. You also need to own a smartphone or suitable mobile device and be able to use it to complete surveys. If you have any physical, mental, or understanding difficulties that would prevent you from filling out questionnaires, you would also not be able to participate.

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.

Do you have a confirmed NET diagnosis?
Are you 18 years old or older?
Do you own a smartphone and have regular internet access?
Are you able to understand English questionnaires?
Are you currently NOT being treated for another type of cancer?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you would use a special mobile app downloaded to your smartphone at home. There are no clinic visits specifically for the study. You'll be asked to record your daily symptoms through the app and complete more detailed quality of life questionnaires at specific times: before your treatment starts (month 0), and then at months 3, 6, and 12, and every six months after that. This continues over a period of up to four years. There are no new medications or treatments involved; you will continue with your planned care as usual. All the information you enter into the app will be stored securely and anonymously.

Potential risks and benefits

A potential benefit of taking part is that using the app might help you keep a clearer record of your symptoms and how you're feeling, which could be useful for discussions with your healthcare team. While there are no direct medical risks as this study is observational and non-invasive, it does require a commitment of your time to regularly use the app and complete questionnaires. Your information will be kept private and anonymous. You are entirely free to withdraw from the study at any time without any reason, and this will not affect your care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

King's College Hospital
Verified postcode
London, United Kingdom· Recruiting

Common questions

What is a neuroendocrine tumour (NET)?

NETs are a type of uncommon cancer that can develop in different parts of the body, often slowly.

What kind of app will I be using?

It's a mobile app specifically designed with patient groups to help people with NETs track symptoms, quality of life, and treatment details.

Do I need to go to a clinic for this study?

No, this study is entirely home-based. You will use the app on your smartphone from wherever you are, as long as you have internet access.

Will this study change my medical treatment?

No, this study is 'observational', meaning it won't change your planned medical or surgical treatments. You'll continue with your usual care.

How long will I be involved?

You'll be asked to use the app and complete questionnaires at different points over a period of up to four years, starting from before your treatment.

How to find out more

Raj Srirajaskanthan

r.srirajaskanthan@nhs.net 0203 299 3255 Official trial record

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