It has come to my attention that several sarcoma experts are concerned about the following proposed change to US law:
Here is a letter from Dr. Matthew van de Rijn and Dr. Alexander Lazar:
Alex Lazar and I would like to share our concern about proposed changes to the “Common Rule”. Alex and I believe that the changes will hit especially hard for projects on rare disease such as sarcoma and that these changes will severely affect translational research in the future. It is clear to both of us that many studies we have done in the past would have been impossible to perform under these conditions.
Dr. Grizzle, who also mentions where you can send your opinion in order to prevent these changes from taking effect, very well explains the issue in the attached article.
It is ironic that the new proposed rule, intended to protect the privacy and consent of individual patients, could lead to a decrease in research efforts on the tumors affecting these patients. While we fully agree that privacy concerns need to be addressed, we think that the proposed changes go too far.
Alex and I believe that letters from patient organizations and from individual members of these organization could play a major role in preventing these changes to the Common Rule to take effect. The deadline for submitting your comments is getting close (Dec 7, 2015) and we urge you to consider sending in your comments soon. In addition you could consider contacting your US representatives (House & Senate) as well.
Thanks very much,
Alex and Matt
"5-GrizzleCCR.full.pdf (155 KB)