SolveCFS BioBank: Calling YOU to Participate in Gathering a Breadth & Depth of ME/CFS Data, Part 4 of 4

The SolveCFS BioBank is a unique and important resource that lowers barriers to ME/CFS research.  It is important because it allows us to effectively seek out and attract the brightest investigators to conduct ME/CFS research. It is unique in that we’ve designed it so multiple research projects are done on participants and results from these disparate studies are combined.  Anyone who has given a sample for the BioBank may very well be participating in every research project we’ve described in this series.

PersonPuzzleOne thing we know about ME/CFS with certainty is that it is complex, like a jigsaw puzzle.  Each research study is looking at only a piece of the puzzle.  Now, when you participate in the BioBank, those many different research studies or pieces of the puzzle are being conducted on your sample.  The BioBank is the platform – the jigsaw puzzle table – where all the pieces are brought together.

By applying a Global Unique Identifier, a GUID, we are able to “string” together results from different studies conducted on the same BioBank participant. The GUID is generated utilizing software that was developed by the National Institutes of Health (NIH) and is installed on our BioBank computer.  Four pieces of personal identifying information are collected from BioBank participants to generate a GUID:

  1. Full legal name of participant at birth,
  2. Date of birth
  3. Sex and
  4. Place of birth.

The software that supports the SolveCFS BioBank changes or encrypts the personal identifying information into a hash code (makes it a secret code).  Only the hash code is transmitted to a computer that turns the hash code into a GUID and transmits the GUID back to the SolveCFS BioBank.  No personal identifying information leaves the SolveCFS BioBank.

Once you consent to participating in the SolveCFS Biobank, our BioBank coordinator contacts you with the form to obtain personal identifying information needed to generate the GUID that looks like this:

BirthCert_GUID

With the GUID, the SolveCFS BioBank can share your data and samples without sharing any personal identifying information with the researchers.  This protects your privacy and confidentiality of your information while providing the opportunity to participate in multiple research studies all without ever leaving the comfort of your home.  Your participation in the SolveCFS BioBank puts you are the center of ME/CFS research.

GUID

Identifying safe and effective treatments for ME/CFS is going to require a number of key ingredients.  Linking data generated on a sample from our SolveCFS BioBank participants is one of the most important and valuable assets we bring to ME/CFS research. Everyone can participate – those with ME/CFS and the people who care about them, 10 years of age or older. In our BioBank, we need both patients and non-ME/CFS (healthy) “controls”. We encourage every patient to enroll AND get a healthy friend or family member to enroll as well.

The first step is to give informed consent. That process begins when you contact the Association’s BioBank Coordinator, Gloria E. Smith, by calling (704) 362-2343 or sending an email to biobank@solvecfs.org. You will be sent a consent form and once you provide consent, you will receive your GUID.

The SolveCFS BioBank uses an on-demand sampling system.  This way we collect the right kind of sample required for research.  When you match a specific research study we will ask you to provide a biological sample (saliva and possibly a blood sample.) For example, we may fund research looking at the genetics of ME/CFS in families.  We would search our database for families, make contact and determine if the families are interested in participating.  If so, we would send a kit to collect the sample.

Research may require us to collect additional information, depending on the particular research study.  If so, then we would request the needed information at that time. At any point, sharing your personal and clinical information and providing a biological sample is strictly voluntary and, subject to certain limitations, you can change your mind about it at any time.

To learn more please click HERE.  We encourage you to join the hundreds of others who feel deep gratification in taking this tangible step to move the science forward on this devastating illness.

It is our hope that information gained from researchers who obtain samples from the SolveCFS BioBank will help in the early detection, objective diagnosis and effective treatments and interventions of individuals affected by ME/CFS. We can’t accomplish any of this without robust and active participation by YOU, the patient and others who are ready and willing to invest in progress.

If you are ready to be a part of the solution, contact the Association’s BioBank Coordinator:

Gloria E. Smith
(704) 362-2343
biobank@solvecfs.org

We hope to hear from you soon!

If you missed earlier installments in this series, access them here:

PART 1

PART 2

PART 3

Tags: , , , , , , February 7, 2014
  • Juana

    After a cruel 2-year struggle, I diagnosed myself as having Chronic Fatigue Syndrome in 1990. The diagnosis has been confirmed by other doctors since then.

    I’m 66 and the past 25 years or so have been grueling.

    I hope I can get some help here and give help as well.

    Kaiser Permanente is my medical coverage. Juana