It appears that we as Adenoid Cystic Carcinoma survivors may have a chance to directly participate in clinical data collection. Describing the second phase of the RDCRN: "In this second phase of the RDCRN, the University of South Florida will continue these data management efforts, under a new name and with a slightly different charge, as the Data Management Coordinating Center (DMCC). The DMCC will develop uniform investigative clinical research protocols for data collection in collaboration with the RDCRN Steering Committee, monitor protocol adherence, data collection and data submission, and work with the each consortium's Data and Safety Monitoring Boards to establish protocols for adverse events notification and reporting."
MD Anderson is one of the 19 consortia listed, and will be studying ACC and other rare salivary gland cancers"CONSORTIUM TITLE, INSTITUTION, AND PRINCIPAL INVESTIGATOR: Molecular and Epidemiologic Characterization of Salivary Gland Carcinomas - University of Texas M.D. Anderson Cancer Center - Adel K. El-Naggar, M.D., Ph.D. NIH COLLABORATORS: ORDR, NIDCR DISEASES TO BE STUDIED: Salivary gland carcinomas: mucoepidermoid carcinoma (MEC), adenoid cystic carcinoma (ACC), adenocarcinoma (ACC)"
The RDCRN has not updated their page that shows open studies since 1 August 2009: http://rarediseasesnetwork.epi.usf.edu/study-overview.htm . I will keep watch on their homepage to see if the new studies are listed: http://rarediseasesnetwork.epi.usf.edu/ , as well as watch for that new DMCC site to start up - that may be the site that offers information on the new studies. I will announce the arrival of such a website on this blog, you can guarantee it. I want every one of us counted (that the study will include) in any future studying that may be done. (Caveat - I just saw this announcement at NIDCR: http://www.nidcr.nih.gov/GrantsAndFunding/See_Funding_Opportunities_Sorted_By/ConceptClearance/CurrentCC/TumorBiorepository.htm, so the data Dr. El-Naggar may be seeking may be biospecimens, and not our personal data. If this is so, I am slightly frustrated - someone should be creating a patient repository of our information to see if there is any common denominators that lead scientists to see what brings on this kind of cancer.)