Get Involved!

The NET Patient Foundation does undertake in house research focused on patient experience and unmet needs. We would be grateful if you could spare a few minutes to complete any surveys posted here, your experience is invaluable. We will keep you posted with results of surveys through our newsletters, website and social media channels.

Thank you. 

Your NPF Experience 

The NPF team would like to ask for your help to improve and maintain our services, by taking a couple of minutes to tell us about your NPF experience. We want to make sure our service(s) meets your expectations – all responses will be used in service review and improvement plans. All responses are anonymised.

Click here to take part

Patient and Public Involvement in Research

Share your unique experiences of diagnosis, treatment and care.

Research on the effects of treatments has often overlooked the shared interests of patients, carers and clinicians. As a result, questions that they all consider important have not always been addressed. But this is changing. There is growing evidence that by involving people with lived experience of a particular condition the quality of research can be improved.

This means moving beyond thinking of patients as participants in a study, but as partners to help shape our work and the work of researchers by sharing their experiences of diagnosis, treatment and care.

Why is your involvement important? 

People who each have a personal connection to neuroendocrine cancer, including patients, carers, and loved ones have a diverse range of views and experiences. Sharing these unique insights with researchers by getting involved in a variety of involvement opportunities helps ensure that only the highest quality research is being conducted.

How can I get involved? 

If this is something you’d like to get involved in or if you have any questions, please email us.

Priorities in Research

The NET Patient Foundation and the Association for Multiple Endocrine Neoplasia Disorders (AMEND) are developing a joint research strategy to ensure that each charity’s research funds are directed towards the most appropriate areas of research. As a patient, your feedback is vital in helping us to achieve a strategy that is fit for purpose, realistic and most importantly, based on the priorities of those affected by neuroendocrine/endocrine tumours.

Please take a few minutes to share your thoughts with us about the type of research that you feel should be a priority.

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The Patient Self-Referral Questionnaire

Failing to enrol patients into clinical trials can dramatically delay the development of new treatments. Currently 80% of all clinical trials (not just NET), fail to hit their full enrolment target.

The NET Patient Foundation is working with the iCancer group on a project to make patient enrolment easier and more effective. The Patient Self-Referral Questionnaire represents a radical departure from current recruitment approaches: instead of relying on consultants and their healthcare teams to inform patients about suitable trials, it will put patients at the forefront of the enrolment process. 

If you have five minutes to spare and have any views (extreme, mild or indifferent) about clinical trials, the way they are currently publicised and the ease with which patients can take part in new research, could you complete following brief survey? Your answers will help us to produce a service that NET patients really need, in a form that is engaging, readily accessible and supportive. We intend to launch a pilot version of The Patient Self-Referral Questionnaire in the summer of this year, 2019.

Click here to take part


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