Representative John Carter from Texas plus other Representatives introduced the “CAL Undiagnosed Diseases Research and Collaboration Network Act of 2013” (H.R. 1591) on April 17th to establish an undiagnosed diseases network.
The purpose for the bill is to:
- Help physicians who handle cases of undiagnosed diseases search for similar cases and to be able to network and collaborate with the physicians handling similar cases
- Help physicians examine cross-distance research so that cases of undiagnosed diseases can be cross-referenced against attributes of common diseases
- Be able to better describe the types and prevalence of cases of undiagnosed diseases in the U.S
- Obtain data such as genetic, environmental, and occupational factors that may be associated with the various types of undiagnosed diseases
- Be able to outline key demographic factors affecting undiagnosed diseases such as age, race or ethnicity, gender, sex geographic location, and family medical history
- To better understand the length of time needed to render a diagnosis
- Provide information on programs similar to the Undiagnosed Disease Program at NIH
NIH may award grants or contracts and cooperative agreements may be offered to the public or private nonprofit entities to collect, analyze, and report on data. The proposed legislation authorizes $5,000,000 for fiscal years 2014 through 2019.