question about clinical studies, etc...

[nborrayo]

Thanks you guys. I have been to that website, Eliz. It seems that indeed, the studies are far away from me. I would have thought Los Angeles would be listed on someof them, but a lot seem to be out of the country. I am happy that there are studies going on, but of course, as you said, Catherine, I would love to be able to contribute to the body of knowledge in order to prevent others from going through it.
I am on the registry and was part of the NIH family genetics study on Preeclampsia, (contacted throught the forum [:)])but that was before I was pregnant.
Thanks for your input. I will check out the Glenveigh Pharmaceuticals trial too, as the worst of my HELLP started immediately after my c-section. Hopefully they won't be able to use me because I will be completely HELLP-FREE! [:D]
Thanks again.

[catherine]

Nichole, you might be stunned by what needs to be put in place before any kind of clinical study starts. Funding, study design, predictive statistics (to figure out how many people you need to enroll and study to generate statistically significant results), institutional ethical reviews (includes issues of informed consent etc.), all have to be in place before individual patients can be enrolled into a particular study. Additionally, you may need to live close enough to the researchers to be available for the provision of samples or data measurements. Beyond that, consider for a moment the study group that you would be representing as a healthy woman hoping to have a healthy pregnancy/delivery/baby. Obviously, your prior history is a significant risk factor, but to the extent that an intervention, particularly invasive, or potentially impacting your fetus would be reasonable? A very difficult thing for IRB (Institutional Review Board) members to evaluate.

That said, it is a major goal of the PF to find ways to facilitate PE researchers. In the future, we hope to be able to directly support researchers via project funding or assistance in kind (facilitating recruitment to studies etc.) You may have noticed our link to a study of a product to be used as a treatment of severe antepartum preeclampsia by Glenveigh Pharmaceuticals (on the PF home page). Many of our members have joined our Registry, and we hope to expand this program and database into a useful research tool in the near future. Even more, I think may of us would welcome a way to directly contribute to the acquision of knowledge or data that, even if it didn't benefit us directly, might contribute to breakthroughs that would help other women, or protect our daughters and ensure that they would never have to experience some of the pain and suffering that we might have experienced.

[eliz]

If you go to www.clinicaltrials.gov, you can search for studies on pe, help, pih, etc and then browse them to see if any are collecting data close enough to you. You also could go to the sites of major hospitals near you and see if they list any clinical trials going on.

[nborrayo]

So, now that I am pregnant again, and given that Preeclampsia and HELLP are usually confined to such a small time frame, I am actually surprised that there aren't people knocking on my door to enroll me in studies. Am I just full of myself? [:p]
Does anyone else wonder why this prime time is not being taken advantage of more to look for causes/treatments?