It's easy to register! You sign up with your name, email (a simple way for us to contact you), password, and birth date. You'll get a confirmation email to verify your email, sign off on an electronic consent and pledge page, and start taking surveys from the homepage.

Once you register, you'll be taken to the consent page. This is a research study, and the UCSF Committee on Human Research (also known as an IRB or Ethics Board) approves and regulates all research studies conducted at UCSF. These consent forms outline the study and exactly what your role will be.

For the NET Voices Study, you’ll be asked to complete a baseline eVisit—consisting of several easy-to-complete surveys that will take approximately 2 hours. The surveys don’t need to be completed in one session, you can complete them any time over a 3 month period. You’ll also be asked to complete short follow up eVisits every 6 months for a total of 3 years. Each of these will take 20-60 minutes to complete.

Ideally, we want you to 1) answer the study's health-related questions, 2) check in every six months so we have your most up-to-date information – we will send an email to prompt you, and 3) participate for at least 3 years so we can track how your health and quality of life changes over time.

You can do each survey module online at your leisure. Most of them are very basic, but a few require some additional effort. For example, you might have to gather medical history information about your tumor and treatment, or history from family members. All of the surveys will help us study if a Web-based program can be used to learn more about quality of life, symptoms, lifestyle, and well-being for patients with neuroendocrine tumors.

You will have an eVisit every six months at which time we’ll ask you to complete a survey. The first eVisit will be the longest in order to collect baseline information. You can complete all of the required surveys for an eVisit in one sitting, or spread it out over time. We’ll remind you when the surveys are due and when you have new ones to complete. Once you finish a survey, you’ll be able to see it logged on your homepage. As the years go by, you’ll be able to see your progress along the way with each year’s surveys on your homepage. The study will last up to 3 years.

Absolutely. We take this VERY seriously, and will do everything we can to protect your information and keep it private and secure. Read the Privacy Policy here.

Absolutely not. We will never sell, rent, or lease your information, and we will never voluntarily share your information without your permission.

We will use your information for research. We collect information about your identity, your health, your symptoms and your behavior in the NET Voices Study. This information will be used in research analyses and results of these analyses will be presented in scientific conferences and published. These presentations and publications will never show any information that could identify you.

All patient data will be collected using the Eureka Research platform. This platform takes multiple measures to maximize data security, including the use of strong encryption, and meets HIPAA guidelines. All research data are stored behind a secure firewall, guarded by intrusion detection software. For more details, please see the Eureka Privacy Policy and Data Security Measures document.

Electronic Security and Adherence to the HIPAA Privacy Rule: The NET Voices Study follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All study data is transmitted, stored, and processed in a secure environment.

It can take many years to analyze collected data and understand it. It will take even more time to develop new treatments and prevention methods. By launching a study of the size and scope of the NET Voices Study, we hope to accelerate our understanding of cancer risk, onset and progression, treatment response, and outcomes. We are committed to keeping you informed of milestones as new research emerges and is translated into patient care strategies.

Once you've signed up for the study, you'll be assigned a personal research coordinator who you'll be able to contact by email or phone with any questions. They'll also email you important reminders and news about the study, if you wish. If you have questions about the study before you sign up, or if you have difficulty signing up, please email us at neuroendocrine@ucsf.edu.