The Infertility Family Research Registry (IFRR) is interested in studies of the long term health of infertility families, and by comparison, families who have had no trouble having children [fertile families], including the health of women, spouses, and children. We want to study when your children are healthy and when they are not: when you are healthy and when you are not. There is insufficient information available on the offspring of assisted reproduction. Some evidence suggests that infertility itself may pose health problems. These and other possibilities are suggested in several recent papers.
We want to learn about your health whether infertile or fertile, man or woman. We want to learn about children of infertile couples arising from spontaneous pregnancies, minimal treatment, and after technologically advanced treatment. We need information from fertile couples so that we can compare infertile with fertile. We hope that this site can become a ‘facebook%rsquo; of sorts where you visit and return for many years. We plan to give back to our IFRR family by sending out information on how our family is doing.
Share with us when your child does well in school and when your child struggles, when your child is well or ill. Share information on your own history and your current health. Our ability to make a difference starts with you.
About our Volunteer Participants
The information below is intended to provide you with a brief summary of our volunteer population as of April 2013.
Participate in the studies listed below
IFRR Validation Study
The IFRR is looking for Registry Volunteers who have undergone one or more cycles of assisted reproductive technology (ART) including any form of in vitro fertilization, intracyctoplasmic sperm injection, frozen embryo transfer, donor egg, gestational carrier, embryo banking or other ART in the U.S., during 2004 to the present. Your participation in the study will include signing a consent form allowing us to obtain clinical data about your ART cycles from the Society for Assisted Reproductive Technology (SART) national database and providing the additional information needed to locate your ART cycles in that database: year of each ART cycle, the state in which you received treatment, and the name of the clinic (if you remember it). The information collected from the national database will be used to validate fields in the IFRR. Your participation in this study will help with future grant proposals to the National Institutes of Health (NIH) to use the IFRR in federally-funded studies.
Stress Questionnaire [CLOSED]
We are looking for IFRR volunteers who have updated their information within the past 3 months. The IFRR Study Team is interested in the resources available to infertility patients, donors, and surrogates for dealing with the stress of infertility and infertility treatment. This brief questionnaire will take about 5 minutes to complete and will help us understand more about this important issue. Answers that you give will be associated with your responses to other questions in the IFRR database such as your treatment history and outcome. Results of this study will be reported in summary form only. No identifying information will be included in any reports. Your participation in other aspects of the IFRR will not be affected by whether or not you participate in the stress questionnaire.
We are looking for IFRR volunteers who have updated their information within the past 3 months (90 days). If you have not logged into the IFRR site recently, please take a few minutes to update your data before you complete this survey so that your responses can be correlated directly with your most recent treatment, reproductive, and health history.
Clicking on the link below implies your consent for us to use the information you provide along with other IFRR data.
This survey will be available for participation through March 20, 2013. It will open again periodically and you may participate more than once.
The Stress Questionnaire is currently closed. It opens periodically and you may participate more than once. Please check back.
Compassionate Care Survey [CLOSED]
Thanks to all 130 of you who completed the “Compassionate Care within the Infertility Patient-Healthcare Provider Relationship” survey! We appreciate your willingness to help shed light on this important topic. Data analysis will begin this spring and we look forward to sharing a summary of the results as soon as possible.
Thank you for your participation!