I know I’ve said this before and I’ll very likely say it again (and again and again!):
research is so very important for
people living with rheumatoid arthritis (RA) and other chronic illnesses.
My personal interaction with scientific research has
primarily been related to figuring out which RA treatment options are considered compatible
during pregnancy and breastfeeding. As I type this, 32 weeks pregnant
with baby number three, it’s crazy to reflect back on how much the data on this
subject has changed in just the past few years.
With my first pregnancy, I was advised to stop almost all of
my RA meds while pregnant, and I had to make the heart-wrenching decision to
wean my son well before I was ready so I could re-start my treatment. With my
second pregnancy, my RA flared badly and I had to make the difficult decision
to re-start a biologic during pregnancy, even though I had previously been
advised against it.
However, my second son and I contributed our data to the
Organization of Teratology Information Specialists (OTIS) Autoimmune Diseases
in Pregnancy Project in the hopes of helping scientists learn more about the
impact of biologic medications on pregnancy. So I was particularly thrilled to
see some results of that study announced at the 2017 American College of
Rheumatology Annual Meeting – notably that using a biologic medication to
manage RA during pregnancy does not appear to significantly increase the
infant’s risk of developing serious opportunistic infections after birth.
So not only was I able to contribute data to a study that
increases treatment options for women with RA who want to become pregnant, I am
now personally benefiting from that outcome myself! With my third pregnancy
there is now enough data to support the safety of using a biologic during
pregnancy and breastfeeding – and I’m doing considerably better as a result!
Of course, this advancement in treatment options is only
possible if patients actually agree to participate in research studies. But even
if you’re willing to participate in scientific research, how do you find a
study or trial? I used the Mother to Baby
pregnancy registry, but what if you aren’t pregnant? You can try ClinicalTrials.gov, but I have to admit
that it isn’t particularly easy to navigate.
And that’s where Clara
can help. Clara is a free online tool that helps connect patients to clinical
trials and breakthrough treatments. You can search the site by medical
condition, location, age, sex, and/or treatment and the guide will handpick
studies that you might be eligible for.
While there are similar trial-matching services out there,
Clara is unique in that they help their members through every single step of the
process. Clara
Guides can answer questions like “what should I know before starting a
trial?” and “what happens after the trial ends?” And once you find a trial you
might be interested in, Clara can help you reach out to the researchers to get
all the information you need. Clara can even help you schedule your visits, arrange
for travel, and coordinate with your insurance provider.
If you’re interested in learning more and potentially
contributing to scientific research yourself, I highly encourage you to check out the
widgets below! I promise that patients down the line - including me! - will thank you!
2 comments:
Love this. Research is so important for developing new treatments and needs to be easier to access. Thank you so much for contributing to our knowledge on how RA treatments affect pregnancy!!
I have found that Clara is an incredible resource. I have especially enjoyed trying out the website in the last couple of months. I cannot wait until I get matched to something.
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