SSF Policy on Surveys of Membership

The Sjögren’s Syndrome Foundation (SSF) recognizes that researchers may want to conduct surveys of its members, visitors to www.sjogrens.org, or attendees to SSF seminars and conferences. The following guidelines will apply to review of any such request:

• Applications will be considered only by individuals affiliated with a university or research institution.
• The approval of the university or research Institutional Review Board is required, and documentation of that approval must be submitted to the SSF.
• The survey must be designed to further knowledge about Sjögren’s syndrome, its treatment, or the quality of life of people with Sjögren’s syndrome or their families. Researchers must agree that the survey tool be reviewed for comments by members of the Foundation’s Medical and Scientific Advisory Board or an ad hoc group, as appropriate. The MSAB will make a recommendation to the Executive Committee for consideration and approval.
• All potential participants must receive notification of the opportunity to participate. This notification must explain the purpose of the survey, include the fact that participation is voluntary, and describe the actions that will be taken to ensure confidentiality and anonymity.
• Surveys will be disseminated by the SSF. The investigator must pre-pay the SSF for dissemination and administrative costs.
• Consistent with existing SSF policy, under no circumstances will the SSF mailing list be provided, in whole or part, to another organization, institution, or individual.
• If results of the survey are to be published or presented publicly, researchers must agree that the manuscript or presentation be reviewed for comments by members of the Foundation’s Medical and Scientific Advisory Board or Board of Directors at least 30 days prior to submission for publication or public presentation. This in no way gives the SSF the right to block publication or presentation, but allows for a comment period and possible publicity.
• Investigators shall prepare a summary of significant findings for study participants that may be posted on the SSF website or otherwise disseminated to the membership.
• The Foundation may deny permission in order to prevent over-surveying a specific population.