[Isl] Important Reminder: Protecting Participant Privacy in the ISL Participant Registry

[Institute for Successful Longevity]

Dear ISL Faculty Affiliates,

Thank you for your continued engagement with the Institute for Successful Longevity (ISL). Our ISL Participant Registry exists because thousands of community volunteers have generously shared their information with us in the hope of contributing to research on aging and longevity. Your studies are what make that contribution meaningful, and we sincerely appreciate your partnership.

Because we are entrusted with information provided by our volunteers, I would like to take a moment to clarify how registry data may and may not be used, and to share several recent updates to the ISL Participant Registry. We apologize for the length of this email, but we ask that you read it carefully if you have used, are using, or plan to use the registry for your studies.

WHAT DATA THE REGISTRY PROVIDES:

When your study request is approved and participants are added to your IRB-approved study, you may receive contact and demographic information, including names, email addresses, phone numbers, mailing addresses, age, and self-reported preferences regarding the types of research in which they are interested.

This information is provided solely for the purpose of recruiting volunteers into your approved IRB protocol. As recipients of these data, researchers are responsible for protecting participant privacy and handling the information in accordance with applicable IRB requirements, university policies, and the ISL Participant Registry Privacy Policy.

APPROPRIATE USE OF THE REGISTRY DATA

Please do not:


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Share, forward, or distribute participant data (including exported Excel files) to colleagues, students, collaborators, or any other individual who has not received approval through their own ISL registry study request.
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Reuse participant lists obtained for one study to recruit for a different study. Each study requires its own approved registry request and active IRB approval.
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Continue using participant information after your study's IRB approval has expired.
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Use the To or CC fields when emailing multiple participants. Always use BCC to protect volunteers’ email addresses.
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Store exported participant lists on shared drives, personal devices, or other locations that are not appropriate for confidential research information.

If a colleague would like to recruit participants through the registry, please ask them to submit their own study request rather than sharing participant lists. This ensures that every use of registry data is appropriately documented and covered by an approved IRB protocol.

RECENT UPDATES TO THE REGISTRY:

To help everyone stay within these guidelines, we have made the following changes:


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IRB-based access control. Once a study's IRB approval expires, researchers can no longer search the registry, add participants, or export participant lists for that study. If your IRB approval is renewed, simply update your study request to restore access.

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Confidentiality reminders. Notices regarding participant confidentiality now appear throughout the researcher portal and on all exported participant files.

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Updated Researcher User Guide. We have expanded the documentation to include guidance on participant confidentiality and responsible data use. The guide is available through the researcher dashboard or directly at: https://isl.cci.fsu.edu/img/ISL%20Researcher%20Portal%20Documentation%20v3.pdf<https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fisl.cci.fsu.edu%2Fimg%2FISL%2520Researcher%2520Portal%2520Documentation%2520v3.pdf&data=05%7C02%7Cisl%40lists.fsu.edu%7C2242fc9dfcd140c7305808dee1c8d2d9%7Ca36450ebdb0642a78d1b026719f701e3%7C0%7C0%7C639196449816275166%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=W5p5CinDkb%2FCnOFczjIS3MDbTdLhkSmxCPX4oW%2Bnajk%3D&reserved=0>


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Approval email enhancements. Registry approval emails now include participant data use expectations and a direct link to the User Guide for future reference.

BE TRANSPARENT WHEN CONTACTING PARTICIPANTS

When contacting potential participants by email or telephone, please let them know that they are being contacted because they previously enrolled in the Florida State University Institute for Successful Longevity (ISL) Participant Registry and indicated their interest in learning about research opportunities.

Your initial contact should also clearly identify:

The title of your research study.
The principal investigator and affiliated institution.
That the study has been reviewed and approved by the appropriate Institutional Review Board (IRB), when applicable.
Why the individual may be eligible to participate.

For example, you might begin with:

"You are receiving this invitation because you previously enrolled in the Florida State University Institute for Successful Longevity (ISL) Participant Registry and indicated that you were interested in hearing about research opportunities. We are inviting you to consider participating in the research study, "[Study Title]," led by Dr. [Principal Investigator] at [Institution]. This study has been reviewed and approved by the appropriate Institutional Review Board (IRB). Based on the information you provided when joining the ISL Participant Registry, you may be eligible to participate."

Providing this context helps participants understand why they are being contacted, assures them that the invitation is legitimate, and reinforces the trust that volunteers place in the ISL Participant Registry. We encourage all researchers to use clear, respectful, and transparent communication when reaching out to registry volunteers.

We recognize that our affiliates have consistently handled participant information responsibly, and this message is not prompted by any particular individual or study. Rather, it is intended as a periodic reminder of our shared responsibility to safeguard the privacy of the volunteers who make this research possible and to ensure that our practices remain consistent with university policies and IRB expectations.

If you have any questions about appropriate use of registry data or are uncertain whether a particular use is permitted, please contact us at support at isl.fsu.edu before sharing or using participant information. We are always happy to help.

Thank you again for your partnership and for helping us protect the trust placed in ISL by our volunteer community.

Sincerely,

Zhe He, PhD
Director, Institute for Successful Longevity
Professor, School of Information
Florida State University
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