Frequently Asked Questions
Many of you have called or written to us with questions about health or health-related resources. We have answered some questions by highlighting specific topics in the Newsletters and we have sent responses to some participants. Here are some of the more frequently asked questions:
Q: Is my response to the questionnaire important?
Q: In 1995, who was invited to participate in the BWHS?
Q: Are there large follow-up studies of the health of black women in progress?
Q: Can new people join the BWHS?
Q: I have a friend who wants to join the BWHS. Can she participate?
Q: Why do you send health questionnaires every two years?
Q: How long will the BWHS continue?
Q: I filled out some of the past questionnaires, but not all. Do you want me to fill out the
 current questionnaire?
Q: How often are health questionnaires sent to BWHS participants?
Q: How will we learn of study results?
Q: How often will I receive a BWHS Newsletter?
Q: Can participants have input into the decision about what health issues will be studied?
Q: If I have a medical question, can the BWHS help me?
Q: I have been diagnosed with lupus. Recently the BWHS asked permission to obtain
 copies of my medical records. Why?
Q: Who can I contact if I have questions about the BWHS?
Q: Is my response to the questionnaire important?
A: Yes, it is crucial. The accuracy of scientific studies like the BWHS depends critically on the continued participation of as many people who completed the first questionnaire as possible. If the participation rate is low, with lots of people opting not to return the questionnaire, there will be doubt that the results are correct.
Q: In 1995, who was invited to participate in the BWHS?
A: Our first questionnaire was mailed to subscribers to Essence magazine and members of several professional organizations. 59,000 women who completed and returned that questionnaire are being followed.
Q: Are there large follow-up studies of the health of black women in progress?
A: The BWHS is by far the largest study yet conducted.
Q: Can new people join the BWHS?
A: No. Because of the study design, it is limited to the women who enrolled in 1995.
Q: I have a friend who wants to join the BWHS. Can she participate?
A: No. Only women who enrolled by completing the first BWHS questionnaire in 1995 may participate in the BWHS. The study design involves following the same women over a long period. Fortunately, the information obtained from the BWHS will be useful to African-American women whether or not they have participated in the study.
Q: Why do you send health questionnaires every two years?
A: Updated information is needed on factors that can change over time, like exercise, weight, cigarette smoking and reproductive health status. The more accurate the information is, the more informative will be the results based on it. We also need to learn about the occurrence of illness among participants.
Q: How long will the BWHS continue?
A: The National Institutes of Health funds studies for, at most, 5 years at a time. At the end of each 5 year period, investigators must apply for a continuation. We were granted a continuation of the BWHS in 1999 and again in 2004. The longest-running large follow-up study of health yet conducted is the Nurses’ Health Study, in which 98% of the participants are white. The study has published 300 medical research articles over the course of 30 years.
Q: I filled out some of the past questionnaires, but not all. Do you want me to fill out the current questionnaire?
A: Yes. Please do. Even if you haven't responded to every questionnaire, the information that you provide is very useful.
Q: How often are health questionnaires sent to BWHS participants?
A: Every two years.
Q: How will we learn of study results?
A: Our regular newsletters will continue to update you as new findings emerge. This website will be updated with the information published in the newsletters, and will provide a description of all study results and the reference you would need to locate any articles that are published using BWHS data.
Q: How often will I receive a BWHS Newsletter?
A: Twice a year, once in the summer and once in the winter.
Q: Can participants have input into the decision about what health issues will be studied?
A. Yes. For example, in 1995 many participants commented on the need for studies of factors related to the high rate of premature birth of black infants. A section on reproductive health was included in the 1997, 1999, 2001 and 2003 questionnaires. If you have suggestions, please let us know by emailing us, calling us, writing to us or listing your ideas in the comment section of the next questionnaire. In addition, the Participants Advisory Group was begun in 2004 to provide input and suggestions to BWHS investigators. BWHS study participants can join the group by contacting the study directly.
Q: If I have a medical question, can the BWHS help me?
A: We can help you find sources of information, but we cannot give advice on specific medical problems. Only your doctors and nurses have sufficient information to help you make decisions about care and treatment. If you are in doubt about the care you are getting, it is useful to get a second opinion.
Q: I have been diagnosed with lupus. Recently the BWHS asked permission to obtain copies of my medical records. Why?
A: Medical record information is used to confirm and classify different types of particular diseases. As always, the information is kept strictly confidential and used only in statistical analyses.
Q: Who can I contact if I have questions about the BWHS?
A: You can call our toll-free number, 1-800-786-0814, to reach study investigators and research staff, or you can email us at bwhs@slone.bu.edu.
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