Angela J Waanders, MD, MPH The Children’s Hospital of Philadelphia

Quick Aside: Scientific Submission Process Scientific Proposal submitted Operations team reviews proposal Specimen Coordinator communicates any questions to investigator Submit to Scientific Committee Specimens CHOP BioRC – processes specimen – extraction of DNA and/or RNA CHOP BioRC- authenticates cell lines- can offer more than just tissue Ship specimens to investigator Process implemented to be able to send to CBTTC sites and to non- CBTTC sites

Obtaining clinical data….. Not as easy as it sounds Initial difficulties Standardize the clinical reporting forms (CRFs)- multi-institutional Differences in Electronic Health Records (finding the data) Differences in Physician Documentation (translating the data) Solving the problem: Spearheaded by Working Groups Clinical Data Working Group Clinical Coordinator Working Group

Clinical Data…..... Beyond the basics Demographics Diagnosis Anatomical location Detailed medical history Comorbid conditions Hereditary Predispositions Family History Pathology Reports Operative Reports Detailed treatment data Chemotherapy Radiation Specific Protocols Detailed Outcome data Progresssion, Relapse, Survival

Further enriching the clinical data Standardize clinical genomic reporting Extended family histories to identify hereditary predisposition syndromes Radiographic images (MRI’s) => Radiogenomics Neuropsychology reports ”Other” data Predictive biomarkers- liquid biopsies Tissue tumor microarrays

The faces behind the data….................

Clinical Data is what provides context and meaning to the Genomic Data Time to ReBrand and change to….............? Children’s Brain Tumor daTa Consortium

“The great accomplishments of man have resulted from the transmission of ideas, into enthusiasm, into actions” - Thomas Watson