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Dear BioBank and Patient Registry Participant,

As a participant in our BioBank, we wanted you to be among the very first to know some exciting news about the SolveCFS BioBank™ and Patient Registry. The Solve ME/CFS Initiative has just received an award through the Robert Wood Johnson Foundation and P.E.E.R. (Platform for Engaging Everyone Responsibly). This award will enable us to undertake a much-needed expansion in the SolveCFS BioBank™ and Patient Registry and allow us to collect more comprehensive and useful data on patients and their experience with the disease.

Some BioBank participants have inquired as to why we have not yet requested a blood sample from them. Though donating blood and other biological samples is important, it is equally important to have medical information from verified patients that researchers can use to study this disease. We are working hard to make sure that this information is put to good use to understand the disease pathology, create diagnostic tools and ultimately develop targeted therapies for ME/CFS patients.

In addition, projects that will require new blood samples from Solve CFS BioBank™ participants are still in development. Project needs can range from age/gender matched patient and control donors, genetically linked donors, geographic or demographically matched donors and many more parameters. Only those who match the specific criteria requested by researchers are contacted to provide blood samples; those not yet contacted may still be matched to future projects.

The Solve ME/CFS Initiative is currently doing the preliminary work of collecting full medical histories and defining the diagnostic criteria that will be most useful for researchers going forward. As a result, we may be contacting some BioBank participants to collect more information and verify their diagnosis. These measures will ensure that we are able to conduct reliable and reproducible research that can make a lasting difference for our patients and their families.

Currently there are three studies with university researchers who are using our BioBank and Patient Registry. You can read about those studies and results in our Research 1st monthly enewsletter.

Thank you again for your participation and your contribution to help accelerate research to solve ME/CFS. We could not do what we do without your help.

If you have questions or comments, please contact me at the information below or Mamie-Louise Anderson (MLAnderson@SolveCFS.org, 704-364-0016, ext. 201).

Sincerely,

Veena Manohar
BioBank Coordinator
704-364-0016, ext. 204
VManohar@SolveCFS.org



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