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. If you would like to withdraw from future participation, please contact the study team.
Q: I’m moving away from Boston. Can I still collect samples for the study?
A: Absolutely! 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: I’m moving out of the contiguous United States. Can I still participate in the study?
A: Yes. You can complete the annual questionnaire online from anywhere. We are unable to send sample collection kits outside the US, or to Alaska or Hawaii, but completing the online annual survey is still extremely valuable.
Q: It’s been several years since I completed a questionnaire. Can I still participate?
A: Absolutely! Even if it has been a while since you last participated, we would love to have you back. Your participation is still very valued and useful to the study team, even if you have not been able to participate for a while. Just complete the most recent questionnaire we sent you. If you have any questions, please contact us and we will be happy to help. If you are no longer receiving communications from the study team, and you would like to be, please reach out and let us know!
Q: I enrolled in the study and then turned 18. Do I need to sign a reconsent form?
Yes! The study team reaches out to participants around the time of their 18th birthday to reconsent to the study as an adult. If you have not participated in a few years and you are now 18 years or older, please contact the study team so we can send you a new consent form to sign. We will not send you an annual questionnaire until we have a signed reconsent form from you.
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 are 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: 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 emailed to you once we receive all completed study components for the year. If you 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. 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 return it with your samples or mail back the form in the pre-paid return envelope provided. You can also complete your Next Menstrual 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 whether or not you want to do the blood draw in each sample collection year.
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: At this time, we only offer phlebotomy services at our Boston sites. If you cannot make it to Boston, we will send you a collection kit for your saliva and urine samples, to be collected at home and sent back to the study team via FedEx. If you would like to use this option, please indicate it on your annual questionnaire when asked about samples, or contact the study team.
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. Contact us here.
Q: Can I enroll in the Women’s Health Study: From Adolescence to Adulthood?
A: As of June 2018, enrollment into the Women’s Health Study: From Adolescence to Adulthood is closed. There may be other opportunities to participate in research with us. Please visit our Research page to learn more, or email [email protected]
Q: Have there been any publications from the study so far?
A: Yes! A number of research publications using your questionnaire data and biological samples have been published since the study’s conception. A full list of these publications can be found on the Research Publications page. If you would like to read an article you are unable to access, please reach out to the study team, and we can send you a PDF.
Q: Why can’t I receive clinical care from the research team?
A: Research staff are prohibited from providing clinical advice to study participants. For your safety and wellbeing, it is important that you receive accurate guidance from a clinical provider who is familiar with your personal care. Your clinical provider can be a doctor from Boston Children’s Hospital or Brigham and Women’s Hospital- just not a research staff member from Boston Center for Endometriosis. If you are interested in clinical care at Boston Children’s Hospital or Brigham and Women’s Hospital, you can request an appointment here.
Q: How can I learn more about study updates?
A: Each year, we publish a study newsletter which is emailed to all participants and is also available on our website. You can also follow us on Facebook for more frequent research updates.