A seachange in research. Can WE make a difference?

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A seachange in research. Can WE make a difference?

Postby eleni » Tue Sep 06, 638929 9:53 pm

An article appearing late last year in The New York Times entitled, “Research Trove: Patients Online Data” by Sarah Arnquist (August 24, 2009), serves as excellent backgrounder to the concept of a Preeclampsia Foundation-driven Patient Registry. However, the precedent for patient advocacy organizations developing and owning the assets to their community’s Registry has existed for some time. Ten years earlier, Citizen Scientist still serves as the one of the landmark articles for the concept that patients could have anything to do with driving research and discovery.

According to the New York Times article, some of the benefits of collecting patient data online, include:
• Mining patient-reported data for observations, exploratory analysis and hypothesis generation about the disease;
• Empowering patients to contribute, ask questions and help lead the way to discoveries;
• Driving the movement toward open-source research vs. the current research system that is fraught with obstacles to collaboration and progress;
• Collecting genetic information to accelerate genetics research

Leaders of both non-profit and private companies doing this kind of registry research make very important points:
• They have detailed patient privacy statements and ethics policies
• Patient trust is critical – “We are only successful if our patients are engaged and using the site…. If we break their trust, we lose our community and we have nothing.” NOTE: The PF has always taken our credibility and patient trust very seriously.

Specific examples noted in the article are:
• The LAMsight web portal is a collaboration between the LAM Treatment Alliance (LTA) and the Massachusetts Institute of Technology (MIT). It is a purely not-for-profit project intended to foster collaboration, impact and data access among all members of the LAM community – patients, researchers, and clinicians.
• PatientsLikeMe is a novel concept spanning several disease communities and is operated by a for profit company. Of their three pillars, “Learn from others” is a value proposition that the PF already does well. The other two areas include “Share your health profile” and “Find patients like you”, the latter being something we’re doing, but could possibly be doing better on a localized basis. I especially like the instant About our Members data you see on this page. Their Privacy Policy covers the legal, ethical, patient protection issues, while their Openness Philosophy is an excellent summary of the sea change this suggests for medical research.
• 23andMe, a genetics company that offers DNA testing, has a good consent form that serves as the basis for the sharing of DNA data.

So what does all this mean for us?
The Preeclampsia Foundation is embarking on the creation of a first-ever National Preeclampsia Registry and Biobank (PRBB), complete with privacy protection and maximizing its potential as a resource for significant research. We've secured partners in this effort and the enthusiastic support of a broad range of researchers, spanning industry, academia and public agencies.

My musings here are just to share some of the growing body of support around this concept. We are not yet ready to announce the official launch of this Registry until more of the infrastructure is in place, but it's exciting and most certainly happening! To survivors of preeclampsia, the PRBB will be a significant way to use your personal experience to advance our scientific understanding of this complex and sometimes disastrous complication of pregnancy.

Speaking of, if you haven't already seen our announcement about the Brain Study on our home page, check it out and please participate.

Stay tuned...


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