PXE International, Inc. is committed to protecting your privacy.
A summary of our privacy procedures, including issues of confidentiality, follows.
Your privacy is important to us. To better protect your privacy, we provide this notice explaining our online information practices and choices you can make about the way your information is collected and used. To make this notice easy to locate, we make it available as a link at the bottom of every page on the www.pxe.org website, and at every point where personally identifiable information may be requested.
When you contact us using embedded email links, your email address, name and other information included in the email correspondance are forwarded through the site to the appropriate persons within PXE International. Hard copies of this correspondance may be kept on the PXE International servers.
Computer Tracking of Identifiable Information
Our servers are not set up to track, collect or distribute personal information (e.g. names and addresses) about our visitors. However, we can tell which Internet service provider our visitors use. This information is used for internal purposes by PXE International staff only.
We compile statistics that show the daily number of visitors to our site, the daily requests for particular files on the site, the countries from which the requests are coming, and browser/operating systems used. This information is used internally to help us improve the content and scope of the site. The statistics contain no personal identifiable information and cannot be used to gather such information.
PXE International links to other sites that may be of interest to those who use our site. PXE International is not responsible for the privacy practices or the content of such websites.
PXE International is firmly committed to the principle of confidentiality of information for its activities and programs. PXE staff members, volunteers and paid consultants have an ethical and legal obligation to respect the privacy of all agency and participant information. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, blood banks, patient registries, or organizational activities.
Procedures for Maintaining Confidentiality
1. All individuals involved with PXE programs or data, whether in a staff, volunteer or consultant capacity, shall sign an assurance of confidentiality, which will be kept on file at the PXE International office.
2. All individuals working with PXE in any capacity shall keep completely confidential the names and individuals contained in any data files, including these individuals' affiliation or genetic condition. All information or opinions, whether the information is learned directly or indirectly, shall also be kept confidential. Individuals shall exercise reasonable caution to prevent access by others to agency or individual consumer information in their possession.
3. Any data containing personal identifiers (names, etc.) shall be kept in a secure area when not being used. Reasonable caution shall be exercised in limiting access to information to only those persons who are working with PXE International, on a project or as part of other organizational activities, and who have been instructed in the applicable confidentiality requirements for the organization.
4. When records or forms with identifiers are to be transmitted to another party, such as for data entry, any outside parties shall be informed of these procedures and shall sign an assurance of confidentiality form.
5. At the end of the period of performance, project or organizational activity, the PXE International Executive Director, as required, will determine how documents/information will be disposed of.
6. PXE International has review rights for any publication that may result from surveys, data analysis, or other activities performed using PXE information. "Publication" means a written article or paper that will be presented at a meeting, published in a journal, newsletter, widely circulated periodical, or online to be distributed via the Internet or email.