Frequently Asked Questions
- The purpose of this research is to learn how uterine fibroids develop, what factors might trigger their development, and how to help prevent health problems caused by fibroids.
- The uterus is a muscular organ. The muscle tissue of the uterus can develop non-cancerous tumors, called fibroids. These tumors don’t spread to the rest of the body, and often they don’t cause any health problems at all. But for some women, the fibroids cause pelvic pain, very heavy menstrual bleeding, or reproductive problems. Fibroids are very common, especially for African American women. One in five African American women eventually have a hysterectomy because of their fibroids. For whites it is only one in 15 women.
- There are 1,693 participants enrolled in SELF
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The National Institute of Environmental Health Sciences (NIEHS), part of the National Institutes of Health (NIH), is conducting this research in collaboration with Henry Ford Health System (HFHS) and DLH/Social & Scientific Systems (SSS).
This study is sponsored by the NIH. This means that the sponsor is compensating HFHS and SSS for the costs of carrying out this research. Social & Scientific Systems, an employee-owned company with years of experience in health research, will be managing the study and working directly with the scientists.
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Social & Scientific Systems (SSS) is a company with years of experience in health research that supports the research work of the Epidemiology Branch at the National Institute of Environmental Health Sciences, one of the National Institutes of Health.
Social & Scientific Systems, Inc. helps NIEHS by:- Designing study materials and questionnaires.
- Conducting interviews.
- Mailing study supplies to participants.
- Receiving and processing the information and specimens that participants complete.
DLH purchased Social & Scientific Systems in 2019 and has remained committed to providing excellent support to the Epidemiology Branch of the NIEHS and the same SELF team has remained intact.
- SELF was planned with the goal of being a long-term study. So far the study has lasted roughly 10 years
- The information we collect from you will be used to better understand why women develop uterine fibroids and how exposures and lifestyle factors may affect fibroid development and growth. This information will be for research purposes only, and is not part of any diagnosis or treatment. The results from all participants will be used to prepare statistical reports and summaries for scientific papers and presentations at meetings.
- Yes. You will be given a research ID number that we will use to identify you. Neither this ID number nor the information you provide for the study will be associated with your medical or health insurance records. Names will not be on any of the blood or other samples or any data collections forms. Every effort will be made to protect your privacy to the fullest extent possible under the law.
- Detroit has a large, active African American population, and there are health providers who have experience with long-term studies like this one.
- Yes, we will periodically send out SELF newsletters to women who participate in SELF. Study updates will also be listed on the study website. However, many things won’t be known until the end of the study, so we will continue to send you newsletters even after your participation ends.
- We will be sharing our findings throughout the study, but many things won’t be known until the study is completed. We will continue to send newsletters to participants after the study to share those findings.
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Dr. Donna Baird, Dr. Ganesa Wegienka or their staff member has explained this research study and has offered to answer any questions. If you have questions or concerns about the study procedures you may contact Dr. Donna Baird at NIEHS at 1-877-692-7353 (SELF) or Dr. Ganesa Wegienka at 313-874-3566.
If you have questions about your rights as a research subject you may contact the Henry Ford Health System IRB Coordinator at (313) 916-2024. The IRB (Institutional Review Board) is a group of people who review the research to protect your rights.
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Your participation in this research study is voluntary. You can stop participating at any time. There will be no penalties or loss of benefits to which you would otherwise be entitled if you choose not to participate or if you choose to stop your participation once you have started.
You may be asked to be involved in other research studies at some time in the future. However, your participation in this study does not require you to participate in other studies.
- There are no immediate benefits to the participants in the study. However, this study will provide important information about the incidence and growth of uterine fibroids so that in the future, other women might benefit from this study.
- You should talk with your health care provider about medical advice and treatment. Please visit the Resources page on the SELF website to get a list of organizations that you may want to contact about health care services. SELF staff may also be able to provide you with printed copy of this information.
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