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Speaking of stuff that looks boring but turns out to be fascinating: I’ve been digging into clinical data registries.
Here's what I've learned, starting with some basics...
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Here's what I've learned, starting with some basics...
[THREAD]
What is the difference between a clinical trial and a clinical registry? Trials are investigational and registries are observational. Trials look forward (what may happen) and registries look back (what did happen).
“Putting it simply, in a clinical trial we tell the investigators how to do it, in a registry study we observe how they actually did it.” - Nancy J. Stark, aka @clinicaldevice (2012) https://clinicaldevice.typepad.com/cdg_whitepapers/2012/10/registry-studies-just-like-clinical-trials.html
Getting people to join (and keep entering data) is a challenge, but registries that prove their value (for ex, improving or saving lives) are more likely to attract & keep patients & caregivers.
Kind of a "duh" point but it's tough to do.
Kind of a "duh" point but it's tough to do.
The @cf_foundation patient registry one wildly successful example: http://www.cff.org/Research/Researcher-Resources/Patient-Registry/
I explored some registry recruitment challenges in this post (and be sure to read the comments from brainiacs like @PaulLikeMe @agaricus + @lymepolicywonk) https://susannahfox.com/2020/03/09/public-qa-patient-registries/
"Is it possible that the architecture of patient registries is not adequate for making the discoveries we need?" - @agaricus (landing him a spot on my #HeckYesSayMore list AND our upcoming #COVIDregistries panel on Aug. 12) https://susannahfox.com/2020/03/09/public-qa-patient-registries/#comment-207686
Register now for our Aug. 12 webinar: Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data (and follow #COVIDregistries) https://register.gotowebinar.com/register/9023040327154304012
"The Covid-19 crisis has exposed the limitations in our research and dissemination enterprise." - the introduction to the #COVIDregistries webinar series.
Catch up and sign up: https://cmss.org/covid19-registries-webinars/
Catch up and sign up: https://cmss.org/covid19-registries-webinars/
Two leaders of a self-organized group of COVID-19 long-haul patients will be part of our Aug. 12 #COVIDregistries webinar: @GinaAssaf and @ahandvanish.
Read: https://patientresearchcovid19.com/research/report-1/
Read: https://patientresearchcovid19.com/research/report-1/
A new type of registry is emerging, growing up between the cracks of the mainstream health care system. @ahandvanish writes about finding other Long Covid patients on social platforms and the research they conducted: https://www.theguardian.com/commentisfree/2020/aug/05/brain-fog-phantom-smells-and-tinnitus-my-experience-as-a-covid-long-hauler
Clinical data registries can adapt to change by listening to patient leaders like @emilysirotich. She wrote about her work in @nature and will be a #COVIDregistries panelist on Aug. 12 https://www.nature.com/articles/d41586-020-02226-3
If you want to dig in further, @CMSSmed has a clinical data registries primer that succinctly summarizes their history and purpose. PDF: https://cmss.org/wp-content/uploads/2016/02/CMSS_Registry_Primer_1.2.pdf
Improving the quality of care delivery is a big reason why clinicians participate in data registries.
But I hope nobody's shocked to find out that it also helps clinicians meet regulatory requirements tied to payment.
But I hope nobody's shocked to find out that it also helps clinicians meet regulatory requirements tied to payment.
