1.  Who is conducting this study?

This study is being conducted by researchers at Emory University, School of Medicine, and the University of Maryland, School of Public Health. Together, through our complementary areas of expertise, we can do a better job at addressing unanswered questions around how lupus impacts the lives of African American women.

 

2.  Who can participate?

African American women with lupus who are part of the Georgians Organized Against Lupus Study (GOAL) Study are eligible to participate. We also ask that you intend to participate throughout the entire two year duration of the Be WELL Study and each of the components of the study, including completing 3 in-person visits and 2 short surveys.

 

3.  Why should I participate?

By participating in this study you would be helping to address the gaps in research facing African American communities and develop strategies to improve the overall health of African American women living with lupus. Through this research, we hope to ultimately be able to identify factors that can help to explain why African American women with lupus face worse consequences from lupus, and also those things that can help to preserve health.

 

4.  What is involved?

This study is two years long. This study involves completing: (1) three in-person visits; and (2) two short surveys over this time period. Each in-person visit takes about 1 ½ hours, during which time we will give you a detailed questionnaire, collect some body measures, in addition to your blood pressure. We will also ask for five drops of blood from a finger prick which we will look at for signs of your health. These in-person visits can be completed at Grady, your home, or any other place that is convenient for you that has a private room. In between these in-person visits we will also mail a short 15 minute survey. You could return these surveys to us through the mail or complete them over the Internet. These short surveys could also be completed over the phone with one of our trained research staff.

 

5.  Why is the study two years long?

The Be WELL Study is two years long because we want to get more than just a single snap-shot of what your health looks like at a single point in time. By following your progress over a two year period, we will be able to find out what factors enable African American women to maintain their health over time. We realize that this is a long commitment and that your time is valuable, so we will compensate you. For each in-person visit you complete, we will give you $100 in cash to cover your time and any transportation costs, and for each short survey that you return to us we will mail you a $10 gift card. 

 

6.  Do I need to commit to the entire duration?

Yes, we ask that all participants in the Be WELL Study plan to commit to the entire two year period of the study and intend to complete all of the components of the study. However, if you decide to take part, you can change your mind later on and withdraw from the study without any penalties whatsoever. This decision would not affect in any way your current or future medical care. You would not lose any benefits to which you would be allowed if you refuse to participate or leave the study.

 

7.  What if I move or more contact information changes?

We ask that you agree to notify our research staff if you are planning to move or your contact information changes during the course of the study. We will request that you provide the name and information of someone else we can contact just in case we have any difficulty getting a hold of you. We do this to help ensure that as many participants stay involved for the entire duration of the study so that we can track your progress. 

 

8.  Are there any risks?

There is very little risk involved in participating in this study. You might experience some discomfort when we are taking your measurements and also a sharp pain when we prick your finger, but these will just be temporary and not severe. You might also experience some emotional discomfort or frustration when answering the questionnaires, like when thinking about the past or stressful experiences. But these types of questions are generally without risk and you can refuse to answer any question.

 

9.  Are there any benefits?

The goal of this study is to learn new things about lupus and it is our hope that the information we gather will help improve the health of African American women living with lupus. African American women living with lupus will benefit from the knowledge that we gain as a whole. Although it does not provide any direct benefits to you with respect to your own healthcare or treatment, by participating in this study you may gain some insight into your life experiences. We can also give you information about your height, weight, blood pressure, and other body measurements. We realize that you are giving your time and effort to participate, so we will compensate you for this. We will give you $100 in cash for each in-person visit you complete and a $10 gift card for each short survey that you return to us.

 

10.  Will my information be private?

Yes. All of your information will be completely confidential. We will use a study number to identify the data that you provide rather than your name or other personal information. We will not disclose this information to anyone in any way that could be used to identify who you are. None of the information you provide will be placed in your medical record. 

 

11.  How do I participate?

We are no longer recruiting participants for the Be WELL Study. Thank you to everyone who has participated in our study!