Patient/Foundation Workshop

...More than 30 patient family advocates and foundation representatives from the pediatric cancer and structural birth defect communities came together for the Kids First Patient and Foundation User Group Workshop

On Tuesday, November 14, 2017, more than 30 patient family advocates and foundation representatives from the pediatric cancer and structural birth defect communities came together for the Kids First Patient and Foundation User Group Workshop at the Children’s Hospital of Philadelphia. The DRC is charged with creating an online research tool with the capacity to manage, distribute and support analysis of data from pediatric research studies. Currently, there are 22 Investigators from across the country working with the DRC to develop the portal in partnership with the NIH and patient representatives. The Kids First Patient and Foundation User Group workshop included three interactive sessions designed to provide opportunities for patient families to help inform on the development of a new website and data portal for the Kids First Data Resource Center. In support of the mission of the Kids First Data Resource Center, the Patient & Foundation User Group Workshop provided a novel, unique opportunity for patients, doctors and researchers to work together as partners to better understand the needs of the patient community.

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Please contact Bobby Moulder, Children’s Hospital of Philadelphia.

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