In the Fall of 2016, the US Congress passed the “21st Century Cures Act.” The Energy and Commerce Committee defines this act as follows:
“All of Us” will soon launch and begin enrolling 1,000,000 people from across the United States. Participants will have an initial clinical examine and contribute bio-specimens such as blood that can be used to create a genome wide association study. The genome sequence, the participant’s electronic medical record and self-reported surveys will be combined to create a unique study database that can answer critical questions of what treatments will work for which patients. The study is designed to be longitudinal (a study over time) so that it can answer questions about outcome and quality of life that are not typically able to be studied with traditional research paradigms.
Gross and others were able to contribute “use cases” — study questions and required data elements for collection – that were targeted specifically at long term outcomes in CP. These use cases augment the CPRN registry and other studies CPRN is planning by providing the potential for genomic data for patients in the CPRN registry. We will provide information about how you can enroll when the “All of Us” study is launched later this spring.