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Mon Oct 19, 2015, 12:46 AM
The MDS Clinical Research Consortium, an alliance between leading institutions (http://www.crushmds.org/about-us/myelodysplastic-syndrome-clinical-research-consortium/) dedicated to studying MDS, has launched a new website called CRUSH!!MDS (http://www.crushmds.org). Edward Parker Evans, who suffered from MDS, was inspired to form the alliance because he recognized there was no efficient means for doctors and other researchers to communicate information about new and more effective treatments for MDS to patients. He wanted to speed up the process and so envisioned a research consortium specifically for MDS that would facilitate collaboration between institutions and researchers, speed up drug development, and minimize bureaucracy. Through the Edward P. Evans Foundation (http://www.crushmds.org/our-sponsor/), he funded the development of the MDS-CRC.
When fully developed, CRUSH!!MDS will allow HIPAA-compliant data collection from and communications with patients and it will be used to recruit patients onto clinical trials and translational studies, in combination with other outreach efforts. The first translational effort will be to collect peripheral blood samples from patients who have been treated with four or more cycles of azacitidine (Vidaza) and/or decitabine (Dacogen).
To receive information about the MDS clinical database (patient registry), complete the form (https://www.aamds.org/forms/crush-mds) available at the AA&MDSIF website.
When fully developed, CRUSH!!MDS will allow HIPAA-compliant data collection from and communications with patients and it will be used to recruit patients onto clinical trials and translational studies, in combination with other outreach efforts. The first translational effort will be to collect peripheral blood samples from patients who have been treated with four or more cycles of azacitidine (Vidaza) and/or decitabine (Dacogen).
To receive information about the MDS clinical database (patient registry), complete the form (https://www.aamds.org/forms/crush-mds) available at the AA&MDSIF website.