We are in the process of setting up a Scientific Panel. The purpose of this Panel will be to consider applications for funding  from key NET centres engaged in research projects. The Panel will then decide which projects should receive funding, and how much. We are hoping to be able to provide more funding for projects over the coming years. Our current fundraising target is £1 million by Spring 2010. If you’d like to help us with our Fundraising, please click here .

We’ll let you know more about our Scientific Panel later in the year.

It’s important that you are satisfied that you have enough information to make an informed decision. You should feel free to ask any questions that you believe are important in helping you to reach a decision. You should also feel satisfied that you have been given enough time to think about the trial and what it will mean to you before you decide.

The person who suggested that you take part in the trial should first discuss it with you and answer your immediate questions. They should be able to give you a patient information leaflet or factsheet about the trial that you can take away and read in your own time. Any other treatments that may be appropriate in your situation should be discussed with you. You may want to talk about it with your family or friends and think about any practical aspects, such as extra appointments and tests.

If you decide that you wish to take part, you may be asked to give your consent verbally to the person carrying out the trial, who will write it in your notes. You will then be asked to sign a form that says that you agree to take part, and the form will be countersigned. You will be given a copy to keep.

If you decide that you do not wish to take part in the trial, you can tell your doctor or nurse. Your decision will be respected and you don’t have to give a reason. There will be no change in the way that you are treated by the hospital staff and you will be offered the standard treatment for your situation.

Remember that, even after you have given your consent, you can leave the trial without giving a reason at any time and your doctors will not hold it against you. If you are having a new treatment as part of a trial and then leave the trial, you may not be able to continue having the new treatment. In this situation you will be given the appropriate standard treatment for your type of cancer.

www.clinicaltrials.gov

ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

www.controlled-trials.com

This is the UK equivalent to the above.

UKI NETS now also has a list of current clinical trials on their website:

http://www.ukinets.org.uk/clinical/index.html

We have picked out a few very current studies that you can have a look at.

Just click onto Pharmaceutical Studies.

• To understand what causes NETs
• To understand how NETs form
• To formulate more effective diagnostic scans and tests
• To discover new treatment options, and to ensure that current treatments are being implemented to provide the best therapeutic benefit

Neurocendocrine Tumours are a less common form of cancer, and there are small teams of dedicated medical professionals around the country who treat patients every day. It is important that these specialists are allocated the resources to carry out research within their units, so that our understanding of this disease and how to treat it continues to grow.

A lot of research studies are carried out by NET specialists in their clinics. In clinical trials, patients agree to try new therapies (under careful supervision) in order to help doctors identify the best treatments with the fewest side effects.

If you want to take part in a clinical trial, you should discuss this with your specialist, who will know whether you are eligible.

Please be aware that all studies are run on strict inclusion and exclusion criteria for the safety of the patients. You may not be eligible, which can be frustrating, but no medical professional is able to influence any decisions based on these criteria.

If you have been asked to take part in a clinical trial, and would like to discuss it, please don’t hesitate to get in touch with us.

No one should ever include you in a clinical trial without asking you. A doctor, nurse or other researcher will ask your permission, and they can’t enter you into the trial if you don’t give your consent.

To help you decide whether you want to take part, the researchers should tell you all about the study:

• what it is trying to find out
• how you will be treated
• what you will have to do.

Efficacy and Safety of Everolimus (RAD001) in Female or Male Patients 18 Years of Older with Advanced Neuroendocrine Tumors

Sponsored by Novartis

This study is ongoing, but not recruiting participants.

RAMSETE: RAD001 in Advanced and Metastatic Silent Neuro-Endocrine Tumors in Europe (RAMSETE/CDE16)

Sponsored by Novartis

This study is not yet open for participant recruitment

Safety and Efficacy of Pasireotide Long Acting Release vs. Octreotide Long Acting Release in Patients With Metastatic Carcinoid Disease

Sponsored by Novartis

This study is currently recruiting participants

Everolimus and Octreotide in Patients With Advanced Carcinoid Tumor

Sponsored by Novartis

This study is ongoing, but not recruiting participants

SOM clinical trial details — carcinoid C2303 page 1 pdf.zip

SOM clinical trial details — carcinoid C2303 page 2 pdf.zip

FINAL – Sandostatin LAR – US ASCO GI press release – January 13 2009>>