Privacy Matters

Last Updated: January 11, 2007

At NOCC, we understand that health is a very personal, private subject, and we want you to feel as comfortable as possible visiting our website and using its services. This statement sets forth our Privacy Policy and advises you about the information we collect, how we collect it, how we secure and protect it, and what choices you have about how that information is used. NOCC knows that privacy and security is important to you and to all of our users. Our commitment to privacy and security is uncompromising and guides every decision we make about how, where, and when to collect information from users. The personal information we collect helps us to provide the best possible information on available treatment options for select disease categories. We are constantly working to improve our site and services. Your shared information helps us make these improvements and offer you a greater selection of treatment options and other services.

Earning and keeping your trust and respect is of primary importance to us. We pledge to protect your privacy and keep your personal information secure and confidential. Be assured that the personal information you share with NOCC is kept strictly confidential and fully secure unless you, the user, specifically request otherwise.

Information we collect

We collect information from you in five distinct areas of our website:

(1) Member Registration (2) Patient Profile (3) Message Center (4) Contact Us (5) Submitting an Application

The information we collect in these areas is limited to the information that you choose to share with us.

1. To protect your privacy, our Registration form can be filled out anonymously, meaning that no personal or identifying information is required. General demographic information (e.g. gender, birthdate, zip code) is collected to ensure that our content and services best suit your needs. Email addresses are optional, unless you request to be notified there when there are updates in your NOCC Message Center (which you can do by clicking the appropriate box). An example of this notification might be: “There is a new message in your NOCC Message Center.” NOCC will not send your clinical trial match results or any other confidential information to your home email address. For maximum protection, we keep that information within our secure, password-protected environment.

2. The Patient Profile can also be filled out anonymously. Users can make up a name for themselves, their loved ones, or patients. Zip codes are required for matching to a clinical trial site. NOCC does not correlate information in the registration form with any medical information provided in the Patient Profile. Therefore, if you are filling out the questionnaire for yourself and you have already provided us with your personal email address in the registration form, your email address will not be used to identify you. NOCC cannot be held responsible for any personal disclosure regarding this information by you to any third party.

3. When you contact us via email through your NOCC Message Center, you grant NOCC the right to receive, transmit, monitor, retrieve, store, and use your personal information in connection with the operation and maintenance of this feature. In accordance with the provisions of this Privacy Policy we will not give, sell, or distribute your personal information. All messages posted on the NOCC Message Center must follow the “Discussion Forum Guidelines” posted on each forum. The website administrator reserves the right to remove messages that do not comply with these guidelines.

4. Likewise, when you contact us via email through Contact Us, you grant NOCC the right to receive, transmit, monitor, retrieve, store, and use your personal information in connection with the operation and maintenance of this feature. In accordance with the provisions of this Privacy Policy we will not give, sell, or distribute your personal information.

5. Only when you match to a clinical trial and decide to submit your pre-screened Patient Profile to the study coordinator will we ask for your name, address, phone number, and email address. Contact information is collected on the Submitting an Application page and used by NOCC staff to facilitate communication between the patient and the clinical trial coordinator. NOCC will not give your contact information directly to trial coordinators without your explicit consent. Neither will we call you (at the phone number you provide us) to verify your application unless you grant us permission (which you can do by clicking the appropriate box). Once communication takes place between you and NOCC, either by phone or through our Message Center, we will assist you in contacting the clinical trial coordinator.

Please keep in mind that in some instances the range of services available to users is tied to the information provided, therefore, if you choose not to provide certain information or provide information on an anonymous basis, some services may not be available for your full use.

What we do about “cookies”

“Cookies” are small pieces of information that are stored by your browser on your computer’s hard drive. NOCC does not store information about you in “cookies” that we can find and use later. Therefore you can feel secure that unless you choose to share information with NOCC in one of the five areas described earlier, we will not collect any personally identifiable information about you without your consent.

Please be aware that websites to which NOCC links may collect personally identifiable information about you and may have different practices and policies concerning privacy issues. The information practices of these websites are not covered by this Privacy Policy. NOCC has not contributed to, nor does it have control over, the content of these websites and accordingly, their content should not be attributed to NOCC.

How we protect your information

NOCC keeps all your personal information confidential on a password-protected system. No other user can view or change your information without your Username and Password.

NOCC puts you, the user, in control of your personal information. You can edit, update or delete any information that you have provided. Your information is saved until you edit, update or delete it. To cancel your membership, please send an email to nocc@ovarian.org

NOCC wants your personal information to remain as secure as reasonably possible. That is why we have a system at NOCC that combines leading technical safeguards and a code of conduct for those employees that are permitted to access our users’ personal information. On the technical side, NOCC uses Secure Socket Layer (SSL) technology to protect your information while in transit between your computer and NOCC’s secure server to help ensure the integrity and privacy of the personal information you provide to us. As an additional security measure, any personally identifiable information is kept separate from any medical information you choose to provide. On the employee side, only authorized NOCC employees are permitted to access your personal information. All NOCC employees must abide by our Privacy Policy and those who violate this policy are subject to disciplinary action, up to and including termination. All data forms are secure and 128-bit encrypted. Personal Identifier Information is also encrypted and stored in our database.)

In order to provide you with a secure online experience, you will automatically be logged off of the Patient Profile, Message Center, Saved Patient Profiles, and Your Folder if there is no activity on that page for 20 minutes. To reenter, you will need to log in again, using your Username and Password.

When we disclose information we collect to outside parties

Except as set forth in this Privacy Policy, we will not disclose to unrelated persons or entities any information you provide to NOCC that could be used to identify or contact you (“personal information”). Any personal information provided to persons or entities affiliated with NOCC will be treated in accordance with the terms of this Privacy Policy, unless you are otherwise notified. In the following limited circumstances we will consider, and may release, personal information to third parties: (1) to comply with legal requirement such as a law, regulation, search warrant, subpoena, or court order; or (2) in special cases, such as a physical threat to you or others.

With your specific consent, NOCC may provide your personal information to third parties in order to assist you in finding a clinical trial that may be appropriate for you. Personal information will only be shared with third parties with your specific consent, and will be transmitted to those third parties using specialized encryption software, much like that used in a banking transaction. NOCC may also enclose personal information in a message sent to your individual message center mailbox. These messages -- which may take the form of an update or a notification of a possible appropriate match -- will be sent to your individual message center mailbox only, and not to your home or work e-mail address.

NOCC may provide information about you that does not allow you to be identified or contacted (“aggregate information”) to third parties. For example, we might inform third parties about the number of users of our site interested in information about a particular disease category or information about the number of users who live in a particular geographic region. We may also provide aggregate information to entities for the purpose of determining whether additional clinical trials are needed in a particular disease area. Depending on the circumstances, we may or may not charge third parties for the right to access this aggregate information.

Except as provided in this section, NOCC will not disclose to unrelated persons or entities any personal information that you provide to us. The Member Registration, Patient Profile and Message Center systems are powerful storage tools that we hope you will find useful. Please note, however, that you are responsible for taking all reasonable steps to ensure that no unauthorized person shall have access to your Patient Profile or mailbox identification and password. It is your sole responsibility to: (1) control the dissemination and use of identification numbers and passwords; (2) authorize, monitor, and control access to and use of your identification numbers and passwords; and (3) promptly inform NOCC of any need to deactivate an identification number or password. You grant NOCC the right to receive, transmit, monitor, retrieve, store, and use your personal information, including information that may be privileged and confidential under applicable state and federal laws, in connection with the operation of or maintenance of your Patient Profile and mailbox. NOCC cannot and does not assume any responsibility or liability related to the accuracy or inaccuracy of the information you provide to us. NOCC also cannot and does not assume any responsibility or liability related to your or third parties’ use or misuse of information transmitted or received using NOCC.

Privacy of children

NOCC does not collect, maintain, store, or disclose personal information about children under the age of 13, and will not do so without first providing parental notification, obtaining verifiable parental consent, and implementing the other requirements of the Children’s Online Privacy Protection Act (COPPA).

Your consent

By registering, using the Message Center and filling out a Patient Profile, you grant NOCC the right to receive, transmit, monitor, retrieve, store and use your personal information, including information that may be privileged and confidential under applicable state and federal laws, in connection with the operation or maintenance of these features. NOCC cannot and does not assume any responsibility or liability related to the accuracy or inaccuracy of the information you provide to us. NOCC also cannot and does not assume any responsibility or liability related to your use or misuse of information transmitted or received on the site.

NOCC has the right to suspend or eliminate your right to use this site and to remove any information that you have placed on our site. NOCC may also change this Privacy Policy at any time by posting revisions on our website. Your use of the site constitutes acceptance of the provisions of this Privacy Policy and your continued use of the site after such changes are posted constitutes acceptance of each revised Privacy Policy. If you do not agree to the terms of this Privacy Policy or any revised policy, please exit this site immediately.

Tell us what you think

If you have any questions or concerns about our Privacy Policy, please contact us via email at nocc@ovarian.org or call our toll free number: (888) OVARIAN (1-888-682-7426).