The American Council of the Blind will take advantage of its 42nd annual national convention to team up with researchers at the Brigham and Women’s Hospital and Harvard Medical School, to host two research studies which may ultimately make a difference in all of our lives. The project is headed by Dr. Steven W. Lockley. You who were at last summer’s convention will, no doubt, remember Dr. Lockley’s interesting presentation concerning body clock disorders which may be unique to the population of totally blind people. (See “The Braille Forum,” Convention 2002.)
Past studies have suggested that certain health conditions may be different for people who are blind and visually impaired than are the case in the sighted population. Dr. Lockley plans to survey health issues, including sleep patterns, possible reproductive health conditions, and lower risk of cancer, which may be unique to the population of people who are blind.
The studies plan to validate some of these earlier findings with a substantially larger population, and with more detailed assessments which participants will carry out in their homes. Dr. Lockley says, “We hope that the results may help to identify risk factors associated with certain medical disorders so that people will be able to make more informed lifestyle choices.”
Any adult who is legally blind can volunteer to take part in either or both of the two studies. Part 1 consists of a survey that asks detailed questions about you and your health. Part 2 will consist of 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 one 24- to 48-hour period while living at home. Some participants may be asked to provide samples every week. 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 equipment used to collect the samples will be provided.
If you will be attending the 2003 ACB national convention in Pittsburgh and wish to volunteer for the study, you will be able to provide the urine samples at the convention, where researchers will be available to give you instructions and collect the samples. You will be asked to complete the sleep diaries in the weeks leading up to the convention.
If you are interested in volunteering for the study, or want more information about either the survey or the study, please call the toll-free phone number, 1-877-23-SLEEP (1-877-237-5337), e-mail [email protected] or write to Dr. Steven Lockley, Division of Sleep Medicine, Brigham and Women’s Hospital, 221 Longwood Avenue, Boston, MA 02115. Remember, if you write, to provide your contact telephone number, address or e-mail address.
We are grateful for ACB’s participation in this ground-breaking research and look forward to sharing our findings with members and readers of “The Braille Forum.”