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

2. 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

3. 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

4. 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

5. 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

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

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

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