CAN YOU RECOGNIZE THE SYMPTOMS OF THE DICER1 SYNDROME? New DICER1 online resource physicians and patients, including variant maps, biobanking instructions and genetic testing. www.dicer1syndrome.ca
With over 50 years of combined research experience, clinician-researchers Dr. William Foulkes and Dr. David Malkin, are pleased to introduce a new resource for patients and healthcare professionals interested in learning more about DICER1 syndrome. Until now, our research has contributed to allowing caregivers recognize the major features of the syndrome, counsel families about the mutation status in their families, and offer surveillance for certain conditions that can occur in those carrying DICER1 mutations. However, due to the rarity of DICER1 syndrome and related tumors, the study of DICER1 syndrome has been limited by the number of cases which occur. This Canadian research network will work to provide an international resource for the dissemination of the information that has been learned about DICER1 syndrome (available in English, French, and Spanish), a DICER1 sample database available for researchers at no cost, and a tool for broadening our reach for case and specimen collection. Please visit our website (www.dicer1syndrome.ca) or contact Evan Weber (firstname.lastname@example.org) for more information.