7 posts tagged “Transplants”

Listen Up! Here Comes The Patient Voice

Posted January 20th, 2011 by

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!

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Comparing Our Transplants Community to the UNOS/OPTN Databases

Posted January 13th, 2011 by

Last November (2010), PatientsLikeMe was fortunate to have the opportunity to showcase our research at the world’s largest gathering of kidney and kidney transplant professionals.  The American Society of Nephrology (ASN) annual meeting is the premiere event platform for debuting revolutionary treatments, cutting-edge technological breakthroughs and top research findings.

PatientsLikeMe presented a poster about our Transplants Community to more than 12,000 physicians, scientists and other healthcare professionals from all 50 states and around the world.  The poster was very well received, and it allowed us to introduce our relatively young Transplants Community to a wide array of industry professionals, many of whom will pass the word on to their patients.

screen-shot-2011-01-13-at-35839-pmThe poster we presented was elegant yet simple in its design.  Essentially, we compared the profile of our Transplants Community – now with more than 3,100 patient members – to published data from the United Network for Organ Sharing/ Organ Procurement and Transplantation Network (UNOS/OPTN) databases.  What did we find?

  • About half of our kidney transplant patients knew the exact degree of tissue matching they had with their donor (referred to as HLA matching)
  • The fewest HLA mismatches in kidneys came from deceased rather than living donors
  • Within the living donors, the closest matches came from siblings, followed by parents and children

These preliminary findings set the stage for more advanced research.  Our goal is to answer a number of questions that are important to patients like you.  For example, who is able to keep their transplanted organs the longest, and why?  Which pre- and post-transplant medication regimens are the easiest on you?  And what is the best outcome you can hope to achieve – and how can you get there?

Thanks to all of our transplants members for contributing to this exciting research.  With your help, we look forward to presenting the answers to these questions and more at future ASN conferences.

PatientsLikeMe member cbrownstein