June 04, 2012

I hope everyone has had an enjoyable holiday this summer and is approaching the academic year fully recharged.

As we enter the fourth year of the second grant cycle for RDCRN, several points deserve emphasis. In October, we had another important set of meetings beginning with the CPAG meeting on October 1, followed by the RDCRN Conference on Clinical Research for Rare Diseases (CCRRD) on October 2. These meetings are an opportunity for the Network to emphasize the importance of rare diseases research and to demonstrate our efficacy in efforts towards training the next generation of physician-scientists to continue the work of the ORDR, NCATS and collaborating NIH Institutes, and the RDCRN. 230 trainees registered for the CCRRD through the web site and over 60 trainees submitted abstracts.

On October 3, we had our semiannual face-to face Steering Committee meeting. Every consortium was well-represented by PIs and the study coordinators.

ORDR and the CTSA program in the Division of Clinical Innovation plan to address ways in which the RDCRN and the CTSA programs can work cooperatively in the future. In this regard, you have received a request from Jeff Krischer and me to comment on interactions that site PIs and staff in your consortium have had with the CTSAs. ORDR and CTSA programs both operate within the NCATS. This is a critical matter for enhancing research and training in the rare diseases research going forward. I strongly urge you to take advantage of this great opportunity to shape future research and training through these two important NCATS programs.

Now is the time to think creatively for the future!

Message from Alan K. Percy, MD
Chair of the Rare Diseases Clinical Research Network
Fall 2012