Have you been diagnosed with Müllerian agenesis, often called Mayer–Rokitansky–Küster–Hauser syndrome (MRKH), or other variations (e.g. MURCS syndrome, CAUV, etc.)? If so, we are asking you to take part in a research study on routine gynecological care for people affected by MRKH. We are interested in understanding how providers inform people with MRKH about sexually transmitted infections including human papillomavirus, commonly known as HPV.

Your responses to this survey, which is part of a research study at Boston Children’s Hospital, will help our team understand the routine gynecologic care and gynecologic health counseling that people affected by MRKH receive. It is not focused on the counseling you have received on fertility or sexual function.

Participation involves completing the following anonymous survey and should take less than 25 minutes. No identifiable information will be collected about you and there is no direct benefit for your completion of the survey.

If you would like to be eligible to win one of five $20 gift cards, please provide your e-mail address at the end of the survey. Risks are minimal, and they include uncomfortable feelings and a rare risk of breach of confidentiality. We have several measures in place to protect your health information. Your answers will be collected in a secure, password-protected website approved by our Boston Children’s Hospital’s Institutional Review Board. Access will be restricted to research team members who are approved by the Institutional Review Board for this study. Participation is completely voluntary, and you can stop taking the survey at any time.

Thank you for taking the time to read the above information. By selecting “I agree,” you consent to begin our survey. You also permit our research team to collect your answers and contact you via email if you win one of our potential gift cards.

If you have any questions, please contact Jessica Shim, Jessica.shim@childrens.harvard.edu.

Thank you for your interest in participating in this survey!

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