New Premature Ovarian Failure Study

I got a call last week from the National Institute of Health (NIH). It caught me a little off guard, honestly.

I participated in a study on Premature Ovarian Failure (more correctly known as Primary Ovarian Insufficiency) in 2009 for which I spent four day inpatient at the NIH. The study was really just collecting data (blood tests, ultrasounds, bone density scans, etc.), not trying any treatments or such. It was a wonderful experience. Robert and I left feeling so much more educated and empowered about my health. And, it was Dr. Nelson (the lead research doctor) who first told us about embryo adoption.

So last week I get a call. It’s a woman’s from Dr. Nelson’s team at the NIH. Dr. Nelson wants to schedule a phone consult with me to discuss a new research study. I set the appointment. I put it on my calendar. But in my hormone-induced, running-late-for-work haze this morning I had forgotten all about it. Thankfully, I had my phone on hand and did not miss his call.

Dr. Nelson first checked on my overall health and ensured I was getting good care for my Primary Ovarian Insufficiency. He then explained that they wanted to test all the known genes is women with Primary Ovarian Insufficiency (POI) in an effort to pinpoint causes for POI.

The study has already been approved by the institutional review board. There is also a sort of “sub-study” which basically relates to patient education. So the first round will be an hour long phone consult about genome testing (education, etc.) and then there will be a follow up about six weeks later. This is the “sub-study” – basically they are combining the primary study disclosures with what I am calling the “sub-study” which is looking at different patient education methods. After going through the educational component I will be given the consent paperwork to choose whether or not to participate in the gene study.

Dr. Nelson did explain that a unique approach to this study is that if any “problem” genes (specifically looking at 56 actionable gene variances) are identified in the study, this would be disclosed to me. Apparently, most studies would not inform participant of such a discovery. He estimates that only 1% of participants would have anything discovered.

All and all, it’s very interesting and exciting. Plus, participation is rather easy in that he will either use my blood samples they already have stored at the NIH or I’ll just need to have a bit more blood drawn. And, if they are successful, they could identify the genetic cause of POI - not a guarantee, but an awesome possibility!

It just seems crazy to be doing this right in the middle of cycling. My one hour phone consult next week is actually on the day of my beta – so I could have to put the doctor on hold to take the call from the NEDC. Crazy, right? Or maybe just a good distractions from counting down the minutes.

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Just as an FYI - If you have POF/POI I do not think this is an “open” study. My impressions is that they are simply pulling from past study participants as they have already gone through the process of confirming our POI diagnosis themselves.