I'm not sure why it took so long for me to get around to this, but I finally signed up as a volunteer participant with the Infertility Family Research Registry (IFRR). I'd like to encourage others to do the same. But I know I might be sort of odd this way...
I'm one of those people who actually digs marketing survey phone calls (as long as they're not too long and don't come at dinner time), mostly because I did enough research as an undergrad to have pity on study authors. I've also earned a buck or two over the years in focus groups. What's not to like about getting a check for telling folks' your opinion on products and services?
I don't expect dinnertime calls from the IFRR; in fact, I'm not so sure they'll even be contacting me ever. After all, my experience as an infertility patient is a fortunately fading memory now. But that's just it -- good research often depends on good controls. Current patients might be exposed at clinic visits to queries for study participants, but how often are those of us who've been-there-done-that anywhere near that information pipeline? And frankly, once you've 'resolved' your infertility in whatever way, how inclined to help do you feel after the fact?
The IFRR was announced at last year's ASRM gathering and is fully SART-approved. I've asked around the 'in the know' circle. IFRR is not only legitimate, it's just about the only attempt of its kind. The purpose of this registry is "to maintain a list of individuals who can be contacted about participating in research studies of infertility treatment including health risks." The Registry aims to cull together patients and former patients, but also people who've never needed to darken a fertility expert's door. Naturally, they also want to bring in any form of third-party reproduction -- egg and sperm donors and gestational or surrogate carriers. The fertility gamut, in registry database form.
So I took some time -- all of 15 minutes on the library's Ubernet -- to sign up and fill out the questionnaires. Piece o' cake, and there aren't many of us who don't like being asked a few simple questions about our attempts at pregnancy and our outcomes. Quick multiple choice stuff. So now when some researcher wants to conduct a large-scale study (often the best kind), it may be simpler for them to find the number of subjects needed to render strong conclusions.
Now, I get that some folks are leery about revealing personal data online, and the first thing participants must do is sign (either on paper or online, your choice) a document typical of research studies that, among other things, spells out that you can bail at any time. If I'm contacted by a researcher using the IFRR database, I can choose to participate or not. Also, there are scattered throughout the questionnaire plenty of options to check "Would rather not say" or "I don't know". You can reveal what you want. Then be on-call for studies or not.
I'm pretty sure I missed my calling as a scientist. I'm just enough of a geek to adore research, but I'd really rather yammer about the forest than conduct tree-to-tree studies. And since I'm lucky enough to not only have resolved my own infertility but also to make a living (of sorts) from it, I think the least I can do is put a few of my story's details on a list for future use.