Open Science

To use human subjects, their tissue, imaging, or other derived data from the UCSF Fein Memory and Aging Center in your study, you must have IRB approval from the UCSF HRPP. The UCSF HRPP will not review your application until the UCSF Fein Memory and Aging Center Executive Committee has approved your proposal and consent form. Therefore, please submit your proposal early enough for review by the UCSF Fein Memory and Aging Center Resource Request Executive Committee. Forms for submitting your protocol are available on the  UCSF Human Research Protection Program website.

While IRB approval is not required when submitting your proposal to the Fein Memory and Aging Center for review, you must provide a copy of your IRB-approved protocol and consent form before initiating your study. For multi-year studies, investigators are required to forward renewed IRB approval annually to the UCSF Fein Memory and Aging Center office.

Contact Information

Attn: Resource Request
University of California, San Francisco (UCSF)
Fein Memory and Aging Center
MC: 1207
675 Nelson Rising Lane, Suite 190
San Francisco, CA 94143

Consent Form Language

Please include language in your consent form that allows for the future use of collected data. For example:
“Your data may be used by the research team now and in the future to answer questions about health concerns, memory, and thinking.”

Use of Subject Names

In compliance with UCSF Fein Memory and Aging Center policies and University regulations, investigators are prohibited from linking subjects’ names with their scores or revealing subjects’ names in videos. For videos, consider requesting only the audio track if movements or facial expressions are not required for behavioral analysis.

All individual data must be stored and filed using UCSF Fein Memory and Aging Center subject identification numbers, not names or initials. If you require a second unique identifier, use the subject’s date of birth. Any communication—whether with the UCSF Fein Memory and Aging Center or others—must reference subject ID numbers, never names.

Investigators are required to follow the Human Research Protection Program and HIPAA regulations for safeguarding subject confidentiality. Your HRPP application must indicate how subject confidentiality will be preserved. IRB approval is contingent on this information. Violations of HIPAA regulations may result in substantial penalties, including fines and prosecution.

If you need to deviate from using UCSF Fein Memory and Aging Center-assigned subject ID numbers, you must first consult the Data Management and Biostatistics Core. Unauthorized deviations may result in an inability to pair individual project data with UCSF Fein Memory and Aging Center core data.

Investigator Orientation to Use of UCSF Memory and Aging Center Subjects

Before beginning testing with UCSF Fein Memory and Aging Center subjects, investigators and research assistants who will interact with subjects must complete an orientation. This orientation covers the procedures for contacting and interacting with subjects, scheduling and testing, reporting weekly schedules, and more.

While data from UCSF Fein Memory and Aging Center research projects are considered the property of individual investigators, UCSF endorses the principle of data sharing. If you intend to use core data for your study, please inform the core leader. Contributions from the core must be acknowledged in publications, and co-authorship should be considered when appropriate based on intellectual contributions.

If you encounter concerns or ambiguous situations regarding data sharing, contact Karen Smith for clarification.

The UCSF Fein Memory and Aging Center developed the LAVA Clinical Research Management System (CRMS) to address the data management needs of research centers with diverse patient assessment measures and multiple interrelated protocols.

Key features of LAVA include:

• LAVA Query Tool: Allows principal investigators to create specialized cohorts and generate custom data sets.
• Multisite Capabilities: A web-based system that supports data hosting for multisite studies.
• Alzheimer’s Research Integration: Utilized by several NIH-funded Alzheimer’s Disease Research Centers (ADRCs), LAVA supports the full Uniform Data Set (UDS) maintained by the National Alzheimer’s Coordinating Center  (NACC).
• Open-Source Collaboration: Programmers at ADRC sites collaborate to maintain and enhance the LAVA codebase.

The LAVA framework can also be adapted for other disciplines, with applications created for UCSF investigators working in fields such as multiple sclerosis and surgical movement disorders. The LAVA source code is freely available under an open-source license in the “lava” GitHub repository, and a demo application is available in the “lava-uds” repository.

For more information about LAVA, contact the Fein Memory and Aging Center IT team.