Carcinoid & Neuroendocrine Tumor Society

An association of patients, caregivers and physicians, promoting better understanding of carcinoid and neuroendocrine cancer,
a relatively rare disease which is poorly understood and is often misdiagnosed.

NETs Patient Survey

An online survey is underway to better understand the specific issues related to Quality of Life for patients living with carcinoid and related neuroendocrine tumors. The survey is conducted by Northwestern University in Chicago and it is sponsored by Novartis Pharmaceuticals.

The survey is open from 5-19 August 2009. The survey consists of about 85 multiple-choice questions which you can complete online. The survey takes about 10-15 minutes, it is anonymous and the questions deal with a patient's overall emotional, social, and physical well-being.

Eligibility
You are invited to participate in the survey if you are a neuroendocrine patient, or if you are a caregiver answering on behalf of a patient. The survey is for Americans and those working in the US. During the survey you must indicate a US State where you are (or have been) resident. Of course you don't give your address, just select the state from a list.

Incentives
When a participant completes the survey, US$ 25 will be donated by Novartis to support carcinoid research and advocacy. At completion of the survey, the participant is invited to select one of the following organisations to recieve the donation.

Participate
Don't wait. Please visit the survey website to register and answer the questions. Your assistance is much appreciated by the community of patients and caregivers.

Results
Researchers will compare the results of this survey with results for the general population in the US to learn more about the impact of this disease. Results of the survey will be shared with cancer scientists, doctors, and public health officials in the US to improve patient care and help them better understand the impact of the disease.



Study Sponsor This study is sponsored by Novartis Pharamaceuticals.