By Judy Stern, Ph.D.
How do we find out about the safety of fertility treatments? How to we discover whether fertility treatment causes health problems for women and children? Do we know whether reported health risks are a result of treatments for infertility or the underlying infertility itself? Are men with fertility problems susceptible to additional health risks? In order to fully understand the answers to these questions more information is needed and studies must be done that include large numbers of women, men, and children. Information has to be collected over many years, be both pre- and post-fertility treatment and it must include people who have had fertility problems as well as those without: those with children and those who never have children.
The Infertility Family Research Registry (IFRR) was developed to help get answers to these questions and to resolve some of the more challenging disputes related to infertility and infertility treatment. The registry is designed to collect information on health history and treatment history of women and men. Volunteers also enter data on the health of any children. This information is used by researchers to search for answers to many of the above questions. The registry also provides a bridge between volunteers and researchers who want to do additional studies to help find out about long-term health and well-being of people who have experienced infertility.
The concept is simple. Volunteers enter information about their health, about their fertility treatment history, and about any deliveries and children. As experiences and health status change, volunteers come back to the registry and enter additional information. The information is pooled and summarized to study the outcomes. Data entry is easy and multiple safeguards are in place to help keep information secure. Only minimal personal information is collected and this is only used to keep in touch with volunteers. Names and other identifying information entered by volunteers are never associated with any published reports. Through the Infertility Family Research Registry, individuals can find out how similar or different their own health outcomes are from those of others with the same diagnosis and treatment history. Rare health conditions may also be identified and the prevalence of these may be revealed.
One of the reasons that large numbers of volunteers are needed to study the health affects of infertility is that infertility is a complex disease. There are many reasons for infertility including female factors such as endometriosis, polycystic ovary disease, or recurrent miscarriage and male factors such as low sperm count or failed vasectomy reversal. There is primary and secondary infertility. Fertility therapy may be needed due to family structure or single parenting. There are many solutions to family building that include treatments such as intrauterine insemination or in vitro fertilization, use of donor gametes, and help of a surrogate. There are decisions for child free living and there are solutions through adoption. As we explore health risks of infertility we need to understand the causes, the treatments and the interaction between cause and treatment as these affect all members of the infertility community.
The Infertility Family Research Registry was developed with a federal grant from the National Institutes of Health. It is similar in concept to registries that have been developed for many other diseases. These include registries for breast and colon cancer, heart disease, and a number of childhood illnesses. IFRR has the support of many physicians and researchers and the national professional organizations that represent them such as the American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technology (SART). Patient advocacy groups such as The American Fertility Association and Resolve are strongly supportive of this effort.
As we collect information into the registry we will periodically post summary results on the IFRR website. More extensive studies will be submitted for publication in professional journals and these results will also be shared and summarized on the website. We will keep in touch with volunteers on a regular basis to request updates and to share data.
Check out the registry at www.ifrr-registry.org . Find out what you can do to help in this effort.
Judy E. Stern, PhD is a Professor of Obstetrics and Gynecology and Pathology and Director of Human Embryology & Andrology at the Lab at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire
Comments