by Steven Lockley

The American Council of the Blind has teamed up with researchers at the Brigham and Women's Hospital and Harvard Medical School, Boston, to launch a nationwide survey entitled, "Health and Sleep in the Visually Impaired." The project is headed by Dr. Steven W. Lockley.

The purpose of the study is to survey the health of blind women, with particular focus on breast cancer risk. Previous studies in Europe have suggested that breast cancer risk may be lower in visually impaired women than in the sighted population, and lowest in women who are totally blind. The aim of the current research is to find out whether this is the case in the USA and, if breast cancer risk is lower in visually impaired women, to discover the reasons why. Possible factors include changes in hormone levels, sleep and circadian rhythm disorders, reproductive history, and other factors such as smoking, exercise or alcohol use. If we can understand why visually impaired women are at a reduced risk, we hope that this information will be used to help both sighted and blind women make more informed lifestyle choices that may reduce their risk of developing cancer. We will keep participants updated on progress with a yearly newsletter summarizing our findings.

Any adult female who is legally blind can volunteer to take part, regardless of her health. The study is in two parts, and volunteers can choose to complete either Part 1 alone or both Parts 1 and 2. Part 1 is a survey that asks detailed questions about you and your health. Part 2 is a home-based study where we will ask you to complete a daily sleep and nap diary for up to 8 weeks and collect urine samples for at least two 24-48 hour periods while living at home. The samples will be measured for hormones to assess the timing of your 24-hour body clock and reproductive function. The survey and any instructions will be provided in the format of your choice, including large print, braille, audiotape, computer disk or CD, e-mail, or verbally. The survey can also be completed on the Internet. The equipment used to collect the urine samples will be provided and has been specifically adapted for visually impaired people.

If you are attending the ACB national convention and wish to volunteer for the study, you will be able to complete the survey there and also arrange to provide some of the urine samples at the convention. The researchers will be there to complete the surveys, provide instructions and arrange sample collection. You will be asked to complete the sleep diaries in the weeks leading up to and following the convention.

If you are interested in volunteering for the study, or want more information, please call the toll-free number 1-888-8-BVI-BWH (1-888-828- 4294), go to, e-mail [email protected] or write to Erin Evans, Division of Sleep Medicine, Brigham and Women's Hospital, 221 Longwood Ave., Boston, MA 02115, with your contact telephone number, address or e-mail address.

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