RISE Registry Research Study Information 

Thank you for your interest in using the RISE Registry as a recruitment tool to engage and include LGBTQIA+ adults and caregivers in your study! Funded by the National Institute on Aging, the RISE (Research Inclusion Supports Equity) Registry is a national, collaborative effort to increase inclusion of LGBTQIA+ adults in aging research. The project is led by Drs. Whitney Wharton from Emory University, Jason Flatt from the University of Nevada-Las Vegas, and Joel Anderson from the University of Tennessee-Knoxville.

 

A major aim of RISE is to establish a research registry of 1,000+ LGBTQIA+ people living with memory loss and LGBTQIA+ caregivers of people living with memory loss to engage and include them in research throughout the U.S. Part of this aim is to offer the RISE Registry as a recruitment tool for researchers. Information about how to use the RISE Registry in your study is outlined below.

 

Study Requirements

All studies using the RISE Registry must include questions collecting sexual orientation and gender identity (SOGI) from all participants or must specifically target LGBTQIA+ individuals in the inclusion criteria. The minimum SOGI data elements include sexual orientation, gender identity, and sex assigned at birth. If you do not already have questions collecting these data, sample questions are provided below.

 

In addition to these minimum data elements, study investigators are strongly encouraged to review existing resources to ensure they and their team will engage with the LGBTQIA+ community in culturally competent ways. Recommended cultural competency resources can be accessed using the links below:

• Advocacy and Services for LGBTQ+ Elders (SAGE)

• GLMA: Health Professionals Advancing LGBTQ Equality

• LGBTQIA+ Aging Project at Fenway Health

 

Approved studies will be promoted to potential participants via the RISE website and targeted emails and newsletters. If your study/program is not focused on LGBTQIA+, but you would like to be highlighted, please note this on the study request form.

 

Research Study Request Form

The first step in having your study promoted via the RISE Registry is to submit the study request form. This form is required for review by the RISE Team.

 

The study request form includes fields for the following information: study title, investigator(s), institution(s), funding status, IRB status, study description, target sample size, inclusion/exclusion criteria, and timeline.

 

Review by RISE Team

Once received, the RISE Team will review your request. We may request a Zoom meeting if more information is needed to clarify or understand your request. You also may specifically request a consultation with the RISE Team using the study request form.

 

The RISE Team will review requests in the order in which these are received and will communicate a decision to the principal investigator within 30 days of receipt.

 

Participant Referral

All approved studies will be promoted via the RISE Registry through a listing on our website, as well as targeted promotion emailed to registry participants fitting the study inclusion criteria.

 

We will not share the contact information of RISE Registry participants directly with any researchers outside of the RISE Team.

 

Investigator Responsibilities

Investigators of approved studies must agree to the following responsibilities:

• Confirmation of IRB approval is required before studies are promoted via the RISE Registry. The IRB approval letter must indicate the RISE Registry as a source of recruitment. IRB-approved email script(s) must be submitted, if applicable.

• Notify the RISE Team of the outcome for all registrants identified within 30 days of study promotion and quarterly thereafter. These data include all potential participants screened for eligibility, enrolled and/or withdrawn, and those who complete the study The RISE Team will provide you with a spreadsheet for tracking registrant contact data.

• All publications or presentations associated with or using the RISE Registry must adhere to the following guidelines:

  • The RISE grant must be cited using the following language: “The project described was supported by the National Institute on Aging of the National Institutes of Health under Award Number 1R24AG066599-01A1. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.”

  • Compliance with the NIH Public Access Policy (https://publicaccess.nih.gov) must be ensured by submitting final peer-reviewed journal manuscripts that arise from NIH funds to PubMed Central immediately upon acceptance for publication.

  • Investigators must notify and provide the RISE Team with a copy of publications or presentations. These will be included on the RISE website and quarterly newsletter.

 

If you have questions about the RISE Registry or would like more information, please contact Dr. Whitney Wharton (PI) at w.wharton@emory.edu.

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