DIPG Brain Tumour Registery
As I sat in the ISPNO (International Society of Pediatric Neuro Oncologists) meeting in Liverpool listening to a presentation of the analysis of the data from the DIPG Registry, I wanted to remind families who are currently in the fight or those whose child has passed, to make sure you register your child in the DIPG Registry. The Registry is the collaborative data bank for over 80 institutions internationally and is used to centralize and standardize the collection of clinical data and tumor samples from DIPG patients. The goal of this effort is to support innovative research and ultimately find a cure for DIPG. In 4 short years we have collected over 700 patients’ data and the information being gleaned from the data is starting to fuel targeted research based on these findings. Different than some of the other parent surveys out there, this registry houses all MRI, clinical, tissue samples, biological data and historical data for patients across the world and is housed at Cincinnati Children’s, Australia, Sick Kids and SCIOPE in the Netherlands. If you haven’t registered your child, though their data may be already inputted in the registry by your institution, your historical data will be helpful in pulling it together (all data will be sanitized to remove identifying information). If your child’s information has not been reported by the institution, the registry staff will contact he hospital to obtain the data, even visiting on-site to pull data themselves. This is such a crucial tool for the researchers to have a central clearing house of data and vital to targeting new DIPG research. To register your child either email referrals@dipgregistry.org or call (AU) 1300265206. Contact me if you have any questions at brooke@thecurestartsnow.org. At ISPNO, nearly 50% of the research being presented cited the Registry as being crucial to the research project. This Registry has been such a labor of love and $1.5 million has been invested by The Cure Starts Now and DIPG Collaborative and I can’t wait to share the data from the analysis! Exciting stuff!
Brooke Desserich
brooke@thecurestartsnow.org
