1. The CASA Project IACFS/ME September 23, 2011

2. CASA ME/CFS Patient Data Need a Home! C ollection A ggregation S torage A nalysis

3. Roadblocks Variable instruments used to collect clinical data Variable clinical trial outcome assessments No standardization of data – quality control No minimal data elements for research reports Inability to compare & evaluate studies

4. Initial Goals of CASA To discuss an efficient, systematic and standardized way to collect and analyze data from ME/CFS patients. To enable use of these data to inform case definitions, phenotype characteristics, research studies, medical decision making, & delivery of health care. To share outcomes with ME/CFS communities

5. Early Considerations Core set of data collection instruments: – What instruments should be used? Other considerations – Samples needed – Validations – Equipment – Costs – Database (Information Warehouses)