Being “Patient-Centric”

SMCI_MarkAs our logo depicts, patients are central to a solution for ME/CFS.  We have designed our SolveCFS BioBank™ to collect and manage data so that the individual is the central organizing principle. A patient-centric design allows for patterns to emerge from the group of biobank participants, while capturing unique individual information. In the future, our SolveCFS BioBank™ will collect experiential, health and genomic information as well as health history and genetic profiles from a large number of individuals, allowing us to identify disease determinants.

The patient-centric design of our SolveCFS BioBank™ allows individuals to participate in many different types of research studies – through online surveys and by providing a genetic sample (i.e. blood) – all without ever leaving their homes.  A single carefully collected and processed blood sample can be used to detect antibodies, quantify cytokines, measure gene expression, sequence genes, and examine chemical modification, measure metabolites and more.  Importantly, all of the data generated on each individual stays connected to that individual through their assigned global unique identifier (GUID), creating a biological explanation specific to the individual while maintaining the individual’s anonymity and privacy.

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The SolveCFS BioBank™ was the first to use a patient-centric design specifically for ME/CFS. Here are some of the researchers that are generating patient-centric data on samples currently in the SolveCFS BioBank™ inventory to help Solve ME/CFS:

  • Michael Cooperstock, M.D., MPH, University of Missouri Health System
    Cooperstock partnered with Madeleine Cunningham, PhD and David Kem, MD of the University of Oklahoma and Armin Alaedini, PhD of Columbia University to test blood samples for autoantibodies to a number of different human proteins.  Alaedini has made a finding that may help describe an ME/CFS subtype. Results are being prepared for publication.
  • Stephen J. Elledge, PhD, Howard Hughes Medical Institute, Harvard University
    Elledge developed a technology that reveals all the viruses targeted by the antibodies in the blood, detecting the interactions between antibodies and the millions of virus proteins, thereby generating millions of data points for each sample. Elledge and his team have completed the testing and are now analyzing the data to determine whether antibodies against viruses are different in ME/CFS patients compared to other diseases and against healthy controls.  We will report on these important findings in 2015.
  • Michael Houghton, PhD, Lasker Laureate, Canada Excellence Research Chair in Virology, Professor in the Department of Medical Microbiology & Immunology, University of Alberta
    Houghton is using samples to validate a possible diagnostic biomarker he has identified for ME/CFS.  Analysis of this potential biomarker validation is underway and we hope to describe it in 2015.
  • Leonard Jason, PhD, Professor, Center for Community Research, DePaul University
    Jason focuses his research on case definition for ME/CFS.  For the past 2 years he has used the clinical information in the SolveCFS BioBank to understand how best to classify and define ME/CFS patients.  So far Jason and his team have published 2 papers and another is under consideration describing their work using the SolveCFS BioBank™ data.
  • Derya Unutmaz, MD, Professor of Microbiology and Pathology, NYU Medical Center
    His laboratory has developed highly sophisticated and detailed profiling technology of the functional subsets of immune cells isolated from human blood.  Unutmaz has completed immune profiling on 25 ME/CFS patient samples from the SolveCFS BioBank™ and is now in the process of analyzing the data, comparing it to immune profiles from other diseases as well as from healthy controls.  (Please go to https://www.youtube.com/watch?v=c9ikUVCXnhU&feature=youtu.be to watch a recent webinar led by Unutmaz on his work.)

Our intention is to evolve the SolveCFS BioBank™ into the most sought after resource for ME/CFS research in existence. In order to achieve this, we must grow in a rigorous and strategic manner.  If you are already signed up, you are our research-ready momentum leaders. Your registration already makes you part of the solution. If you haven’t yet signed up, please contact Gloria Smith at BioBank@SolveCFS.org or by phone at 704-362-2343 to learn more.

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The Solve ME/CFS Initiative is targeting our work in order to one day understand ME/CFS at an unprecedented molecular level and be able to guide research and development of new diagnostic tests and better treatments. Your support and participation has gotten us this far and it is critical to the path forward. Please consider a gift that is meaningful to you – any and every donation help fuel the path forward.

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