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Deep South Health Equity Project 

 

A research study being conducted under the supervision of Professor Pamela Payne-Foster from the University of Alabama. The study is called Deep South Health Equity Lupus Project (DS-HELP) and the purpose of the study is to increase the number of African American lupus patients who participate in lupus clinical trials.

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DS-Help Information

Please read the following carefully before you decide to participate in the study.

Key Information

  • Learn more about lupus with an online training, Lupus Conversations
  • Take a pre test and a post test to demonstrate all the knowledge you have gained
  • Attend and participate in a regional conference on lupus connections in the Deep South
  • Earn up to $300 for participating
  • None of your identifying information will be connected with any of your answers
  • No more than 12 hours of your time over a one year will be needed

Purpose

A research study is being conducted under the supervision of Professor Pamela Payne-Foster from the University of Alabama. The study is called Deep South Health Equity Lupus Project (DS-HELP) and the purpose of the study is to increase the number of African American lupus patients who participate in lupus clinical trials.  We are partnering with three stakeholder groups:  AA Lupus patients, AA primary care providers and clinical research and health disparities researchers who may be interested in participating in lupus clinical trials or lupus health disparities research (preferred AA, but also those who work with AAs.)

What will you do in the study

You will be asked to complete an online course to increase your knowledge about lupus clinical trials called Lupus Conversations which should take you about 4 hours.  This course can be completed at your leisure but you will be given a deadline to complete.  You will also be asked to complete a pre-and post test to test your knowledge. Additionally, you will be asked to participate in a half day zoom conference on this topic which will include a post conference evaluation form.  Incentives will be provided to compensate you for your time.

Time Required

The study will require about 12 hours of your time in total.

Expected Risks

There are no severe anticipated risks involved with participation in this study.  The only risks might be anxiety about participating in clinical trials in the future, however, this study is informational and educational and encourages lupus clinical trial participation, the study does not require clinical trial participation to participate in this study.

Expected Benefits

The anticipated benefits from participating in this research is that your participation will assist researchers in the advancement of scientific knowledge in improving African American participation in lupus clinical trials.
Incentive: To thank you for participating in the study, you will be given two $150 gift cards:  one when you complete the online course with pre/post testing and one when you complete the evaluation survey after attending the final culminating conference.

Confidentiality

For all collected surveys you will be asked to give a unique identifier in order to protect your confidentiality. There will be no way to connect survey responses with individual respondents. Moreover, minimal demographic and identifying information will be collected in order to help preserve privacy.

Completed surveys and the signed consent forms will be kept in a locked filing cabinet in the researcher’s office. After collection, survey data will be stored on a private password protected computer to which only the researcher has access.

Additional approaches to protect your confidentiality will include your choice to use a fake name during the zoom conference and will be asked to use pseudonyms to protect your confidentiality during the zoom audiotaped sessions.

Voluntary Participation

Participation in this study is voluntary. Moreover, if you do participate, you may discontinue participation at any time and for any reason without negative consequences by letting the researcher know.

Use of Research Data

The information from this research will be used only for scientific and educational purposes. It may be presented at scientific meetings and/ or published in professional journals or books or used for any other purposes which University of Alabama considers proper in the interest of education, knowledge, or research. As stated earlier, data will be analyzed and presented in the aggregate such that all individual responses will be kept confidential and anonymous 

How to withdraw from the study

There is no penalty for withdrawing.  You will still receive full compensation/reimbursement (or credit) for the portion of the study you have completed at that point.  If you would like to withdraw after your materials have been submitted, please contact the PI so that she can alert the course coordinator. 

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