Make Your Mark: Sign Up For the IFRR

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. 

Comments

[Kristin]

Hello! I know you don't know me, but we've got something in common. I got your blog address off the Stirrup Queen's blogroll and was wondering if you wouldn't mind helping me help a couple who is trying to add a little one to their family. We're holding a silent auction for them this weekend (Friday and Saturday) on goteamwitt.blogspot.com and need help getting the word out! We would love it if you would spread the word via social media or here on your blog. Additionally, we are always looking for more donations to auction off, so if you or someone you know might be interested in making a donation, all the information is under the donate tab. If you have any questions or would be willing to post a pre-written blog post about the auction and the sponsored couple, please contact Kristin at goteamwitt@gmail.com Thanks in advance for taking the time to consider this!

[Melissa Hardman]

Thanks for posting. Having a database of important information like this can have a huge impact on infertility research. Though not a favorite thing to do, taking time for surveys can help others.

[women fertility]

I agree. After 25 years of family medicine, urgent care, hospice, and now occupational medicine, I still contend that the “laying on of hands (and ears, nose, etc)” is important. Obviously, it completes the ritual of the doctor-patient interaction, but also, albeit relatively rarely, adds some information to our data gathering. The seemingly increasing dissatisfaction of the medical encounter (by both patients and doctors), which is often blamed on time constraints, may be more related to the cursory or absent physical exam.

[Best Fertility clinics]

I believe the fact. After 25 years of family remedies, immediate care, hospital, and now work-related remedies, I still deal that the “laying on of palms (and hearing, nasal area, etc)” is important. Obviously, it does the practice of the doctor-patient conversation, but also, at the same time relatively seldom, contributes some information to our information collecting. The somewhat improving unhappiness of the medical experience (by both people and doctors), which is often attributed on time limits, may be more relevant to the quick or missing actual physical test.