Take the survey.
Mutations: the MPN cause and cure
You can help open a new era in MPN diagnosis and treatment.
MPNs arise and are driven through mutations. The MPN Genomic Study Group –doctors, patients and caregivers — organized to help make mutational testing a standard of MPN practice. First step: Take a few minutes to complete this short survey.
Full results will be shared…and thank you!
Comments on: "Mutations drive MPNs…We can make genomic research routine." (3)
Zhen, I started to fill in the survey; but as my MPN is gone post SCT, it does not really apply.
Best Regards, Charlie
I can find no info about the MPN Genomic Study Group by searching Google. Can you please note who they are and with whom they are affiliated, why they are collecting the info, how they will use the info, etc.?
I see these surveys asking for detailed medical info circulated to MPN patients rather often. I am happy to help, but the collectors have a responsibility to introduce themselves and their aims, I think.
Thank you, Jean, There is a bit of arrogance here on our part, or at least hurried deployment. I assumed an MPNforum organized survey sponsored by the MPN Research Foundation naturally following on from our blue ribbon taskforce work in developing the Stem Cell Transplant Tool would be adequate assurance. (See http://www.mpntransplant.com for a listing of the Taskforce members.) There is no Google path to the MPN Genomic Study Group since it is a closely focused MPN patient and caregiver volunteer project driven by MPN patient Zeta Charania working with the MPN GEnomic Study Group.There is no drug company or commercial involvement of any kind and no compensation paid to the volunteers doing this wlrk. The results are openly and freely shared as in past research and without asking for personal identification information violation of privacy and the need for anonymization seemed minimal. However we introduced none of these credentials on the mistaken assumption that it would have been redundant for those patients and caregivers following the Forum’s story on the UK Landmark Study on Mutations (current issue) and familiar with our community’s combined efforts to make biomarkers available to patients directly through on-line free tools.