Reproductive Health and Family-Building Among Individuals with Fanconi Anemia
Help Us Learn More About Reproductive Health and Family-Building in Fanconi Anemia
Study title: Reproductive Health and Family-Building Among Individuals with Fanconi Anemia: A Questionnaire Study
Principal Investigator: Agata Smogorzewska MD, PhD
Institution: The Rockefeller University
Participants: Adults with Fanconi anemia
Study description:
Researchers at The Rockefeller University are conducting a questionnaire study about reproductive health, fertility, pregnancy, parenthood, and family-building among individuals with Fanconi anemia.
By sharing your experiences and perspectives, you may help improve the information and support offered to people with Fanconi anemia in the future.
Why is this study important?
Fanconi anemia is a rare inherited condition that may affect reproductive health and fertility. However, much of the available information is based on small or older studies.
We still know relatively little about:
- how Fanconi anemia and its treatments may affect fertility;
- experiences with fertility testing, preservation, or treatment;
- pregnancy and parenthood;
- different ways of building a family, including donor-assisted reproduction and adoption;
- whether individuals with Fanconi anemia want children;
- when and how people would prefer to receive information about fertility and family-building.
Your answers may help healthcare professionals provide clearer, more timely, and more patient-centered information and counseling.
Who can participate?
You may be eligible to participate if you:
- have been diagnosed with Fanconi anemia;
- are 18 years of age or older; and
- are able to complete the questionnaire in English
What does participation involve?
Participation involves completing an online questionnaire about topics such as:
- puberty and reproductive health;
- fertility assessment and fertility preservation;
- pregnancy and parenthood;
- fertility treatment;
- wishes and plans regarding children;
- experiences with fertility counseling
The questionnaire will for most participants take 10-20 minutes. For participants with a lot of data to report, this may take longer, up to 45 minutes.
There are no medical examinations, treatments, blood tests, or other clinical procedures.
Some questions may be sensitive
The questionnaire includes questions about fertility problems, infertility, pregnancy loss, medical treatment, and the possibility of not having biological children. Some questions may feel personal or emotionally difficult.
Participation is entirely voluntary. You may skip any question you do not wish to answer.
Your decision about whether to participate will not affect your medical care or your relationship with The Rockefeller University, your healthcare providers, or any patient organization.
How will my information be protected?
Study data will be stored securely and will only be accessible to authorized members of the research team.
Results will be analyzed and presented at the group level. The research team will take steps to avoid reporting information that could identify an individual participant.
In the beginning of the questionnaire, you will be asked to fill out your email address, which is required in case you want to withdraw at a later time and we need to delete your responses. It also makes it possible for us to resend you the questionnaire link if it gets lost. Your email is linked to your questionnaire responses but are saved in a separate sheet with access limited to key study personnel.
Interested in Participating?
Questionnaire link:
Before beginning the questionnaire, you will be shown detailed information about the study and asked to confirm and sign that you agree to participate.
Questions or Help With the Questionnaire
Please contact:
Name: Agata Smogorzewska
Email: asmogorzewska@rockefeller.edu
Telephone: 212 327 7850
A member of the study team may assist by reading the study information, questions, and response options aloud. Study personnel cannot interpret the questions or help choose answers.