Confidentiality of data relating to individual registrations and visitors to this website is conscientiously respected.
The PPRL is firmly committed to the principle of confidentiality of information for its activities and programs. PPRL staff have an ethical and legal obligation to respect the privacy of all personal and confidential information. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, or organizational activities of any kind.
The PPRL gathers only information volunteered by the visitors to the site. The information we collect is used to assess the demographics of our visitors to help us improve service, content, and scope of the site, to stay in touch with registrants, to advise them of new on-line material, to provide updates about the PPRL's content, historical research, and education activities, and to provide announcements of updates or changes in services or information offered by the PPRL. Information generated through the PPRL Web site is never shared with other individuals or organizations for any purpose.
The PPRL retains all personal information in secure files, insuring protection from inadvertent or purposeful access by anyone other than authorized PPRL staff. The PPRL does not allow or participate in any commercial activity or solicitation. All personal information, including names and contact information is kept private and confidential.
RESEARCH AND INFORMED CONSENT:
One of the leading concerns expressed by individuals regarding genetic information and genetic disorders is the issue of privacy. The PPRL takes this concern very seriously.
While the PPRL is not directly involved in clinical research, by the very nature of our interests, some of our demographic and historical research may involve the collection of private and personal health information.
In general, the PPRL strongly believes that any individual considering participation in any medical research, or research of any kind, should be fully informed of their rights and related informed consent guidelines. In any such case, the PPRL is committed to honor or exceed the recommendations for human research and medical and health information privacy that apply in the USA and the State of California.
Any request for contact with registrants for any reason (Example: if the PPRL was made aware of a new research project relevant to the periodic paralyses from an outside researcher or other party), such request will be forwarded to the appropriate individual or individuals who may be interested in responding, and who would then be able to respond directly at their own discretion. The PPRL does not provide registrant lists to any individual or organization.
If the PPRL is ever involved in a research project with an outside entity, arrangements for individual participation are made privately with the individual. In such cases, the PPRL, and any research entity the PPRL may interact with, will abide by the standard guidelines, recommendations, and policies for informed consent and confidentiality as outlined by the Genetic Alliance, the Ethical, Legal, and Social Implications Branch,of the National Center for Human Genome Research and the NIH Human Research Protection Program.
Also see "General References for Research" under our Research Resources Section.