Something we’ve been waiting for has finally come along. As Assistant Executive Director of The American Fertility Association, I was often asked, “how do we know that the children are ok?”
Patients asked, certainly, but quietly, so did those in the infertility medical field. New techniques were developed and instituted, and there wasn’t research to prove that somewhere down the road, the children who were conceived weren’t going to pay a price. We used new drugs and new protocols and we had no idea how our babies were going to be affected, our toddlers, certainly not our teenagers or when our children became adults.
In other words, what we knew was what we saw. Healthy babies, healthy toddlers and healthy teenagers. We couldn’t and still can’t, tell patients what risks they were taking with their children’s health; we didn’t know. We did know what we saw. We want to know more. For years, we’ve wanted to see a prospective, long term study about our children. Information that they could then have in their lives, medical information potentially that they might need to pass on to their own children.
There were many attempts to put together this type of study. Because of the range and scope and funding needed, it hasn’t been done. At The AFA, we worked with The Rand Corporation and still couldn’t get it done. Not enough money, not enough buy in.
It’s here. And it looks really good. You, as current patients, need to read the information carefully. Very carefully. This is about your medical history and that of your children.
It’s called the IFRR (Infertility Family Research Registry).
When I see who is endorsing it, SART (Society of Assisted Reproductive Technology), ASRM (American Society for Reproductive Medicine), a division of NIH (National Institute of Health), Dartmouth Medical College, RESOLVE and The AFA, I feel good about the effort. When I see where the funding it coming from (Eunice Kennedy Shriver Foundation and National Institutes of Child Health and Human Development (NICHD), a component of the National Institutes of Health (NIH)), it’s apparent that there’s a financial commitment here for an important, on going study. Looking further at the investigators, and seeing, among notable others, William Gibbons, past president of ASRM, I see the strong scientific and medical commitment behind this project as well.
I don’t know if you will want to be part of this research. It means divulging, albeit in a private, protected way, very personal medical information.
What I do know is that this registry has the potential of telling us important information about the futures of our children; the ability of participating in scientific studies; and of creating a powerful data base where real conclusions can be drawn about the health and well being of our families.