Frequently Asked Questions
Q: Who is running the Women’s Health Study: From Adolescence to Adulthood?
A: The study is sponsored by the Boston Center for Endometriosis and is being run by Brigham and Women’s Hospital and Boston Children’s Hospital, affiliates of Harvard Medical School, in Boston, MA.
Q: Who is participating in the Women’s Health Study: From Adolescence to Adulthood?
A: Adolescent and adult females over the age of 7 who enroll before menopause are participating in our study. Many of our participants are patients at Boston Children’s Hospital and Brigham and Women’s Hospital, but we also have many participants from the greater Boston community and beyond.
Q: When did the study begin? And how many more years will the study continue?
A: The Women’s Health Study: From Adolescence to Adulthood, which started in 2012, is a longitudinal study so we hope to collect questionnaires and specimens for many years to come. Our study is completely voluntary, but we do hope our participants will choose to continue participating year after year.
Q: I’m moving away from Boston. Can I still participate in the study?
A: Absolutely! Just send us your new mailing address, and we can mail you your annual sample collection kit to collect the samples at home and return to the study team via FedEx. The annual questionnaire will be emailed to you each year to be completed online, but you can also request a paper copy.
Q: What happens to my samples after I collect them?
A: Once we receive your samples, they are processed by our trained lab staff and stored in the Alice S Marriott Biorepository. Your samples will only be labeled with your study ID number and no identifying information, to ensure confidentiality of our participants. All of the samples are stored in large -80 °C freezers until researchers are ready to use them for scientific investigation.
Q: I lost part of my sample collection kit. What should I do?
A: No problem! Email or call us, and we’ll send you a replacement.
Q: Is it okay for my sister/friend/cousin/coworker to participate?
A: Yes! There is no set limit to the number of individuals who may participate in our study. In fact, the more samples and health information we can collect, the more useful these will be for research. If you have a friend or relative who is interested in participating, please have her email or call us directly to find out how to enroll in the study.
Q: When do I receive my gift card for participating?
A: We appreciate the time and effort it takes to participate in the study. All participants receive gift cards as our way of saying thank you. Gift cards are mailed out once we receive all completed study components for the year. If you are think you are missing a gift card, please let us know by phone or email.
Q: What do I do with the Next Menstrual Period Form if I don’t have periods?
A: For the Next Menstrual Period Form, we want to know the date of the first day of your next menstrual period after collecting your saliva sample(s). If you don’t have menstrual periods (because you’re taking hormones continuously, pregnant, unsure, etc.), please check off the box on the form that says “I do not have menstrual periods” and mail back the form with the pre-paid return envelope. You can also complete your Next Menstural Period form by emailing the study team.
Q: Will my health information be kept confidential?
A: The security of our participants’ personal information is our highest priority, and we take several steps to protect confidentiality. All of our study procedures are reviewed by Boston Children’s Hospital’s Institutional Review Board (IRB). All samples and data stored in the database are labeled with a unique study ID number, and not with name, date of birth, or other identifying information. Our staff has received training in protecting confidential health information. We will never give your name or personal identifying information to anyone else. If results of tests performed on the specimens are ever published in the medical literature, no identifying information will be included.
Q: If I consent/initial for blood on the consent form for the study, do I have to do the blood draw every year?
A: No, you can consent to the blood sample and choose every year whether or not you want to do the blood draw.
Q: I would like to provide a blood sample for the study, but don’t want to come to Boston. Can I do it closer to where I live?
A: If you are a participant at Boston Children’s Hospital, you can go to Boston Children’s Hospital satellite clinics at Lexington, Weymouth, Peabody, or Waltham to do the blood draw. Please contact the study team at Boston Children’s Hospital at 617-355-3309 or firstname.lastname@example.org to arrange for the blood draw. At this time, all Brigham and Women’s Hospital participants will have to come to Boston if they are interested in providing a blood sample for the study.
Q: How do I change my contact information?
A: You may notify us of new contact information (name, mailing address, phone number, preferred method of communication, email, etc.) at any time:
For participants enrolled/followed at Boston Children’s Hospital:
Email – email@example.com
Telephone – 617-355-3309
For participants enrolled/followed at Brigham and Women’s Hospital:
Email – firstname.lastname@example.org
Telephone – 617-732-4242