CAL Undiagnosed Diseases Research and Collaboration Network Act of 2013
Latest action (17 Apr 2013): Introduced
What this bill does
H.R. 1591 would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Director of the National Institutes of Health, to establish and maintain a "CAL Network" of undiagnosed diseases. The network would let physicians treating patients with medically unexplained, chronic multi-symptom conditions search for similar cases, collaborate with other doctors, and share data to support diagnosis, research, and treatment. It would also collect information on prevalence, demographics, and diagnostic delays, and could support grants for data collection and for establishing additional undiagnosed-disease programs similar to NIH's existing Undiagnosed Diseases Program.
The bill would primarily affect patients with undiagnosed illnesses, the physicians and researchers treating them, and federal health agencies. Access to network data would be limited to registered health professionals, patients, and qualified organizations, with individually identifiable information and certain confidential business data shielded from public disclosure. It authorizes $5 million for fiscal years 2014–2019, offset by an equivalent reduction in NIH Office of the Director funding, and sets a goal of full implementation by September 30, 2015.
The bill was introduced on April 17, 2013, by Rep. John Carter and referred to the House Committee on Energy and Commerce. It did not receive a vote and did not become law.
Plain-English summary generated by Bill100 AI from the official record. Always verify against the source below.
Official summary
Charles August Long Undiagnosed Diseases Research and Collaboration Network Act of 2013 or CAL Undiagnosed Diseases Research and Collaboration Network Act of 2013 - Requires the Director of the National Institutes of Health (NIH) to establish and maintain an undiagnosed diseases patient network. Includes among the purposes of the CAL Network to: (1) provide physicians who are handling cases of undiagnosed diseases with a means to search for similar cases and to network and collaborate with physicians handling similar cases, (2) better enable and examine cross-disease research, (3) better describe the types and prevalence of cases of undiagnosed diseases in the United States, and (4) provide such data necessary to better understand the length of time for a diagnosis to be rendered and to identify barriers to diagnoses and reasons for misdiagnosis of diseases.
Authorizes the Secretary of Health and Human Services (HHS) to award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for: (1) the collection, analysis, and reporting of data on cases of undiagnosed diseases and other disorders that can often go undiagnosed or be misdiagnosed as other diseases or disorders; and (2) the establishment of separate undiagnosed disease programs.
Common questions
- What does H.R. 1591 do?
- H.R. 1591 would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Director of the National Institutes of Health, to establish and maintain a "CAL Network" of undiagnosed diseases. The network would let physicians treating patients with medically unexplained, chronic multi-symptom conditions search for similar cases, collaborate with other doctors, and share data to support diagnosis, research, and treatment. It would also collect information on prevalence, demographics, and diagnostic delays, and could support grants for data collection and for establishing additional undiagnosed-disease programs similar to NIH's existing Undiagnosed Diseases Program. The bill would primarily affect patients with undiagnosed illnesses, the physicians and researchers treating them, and federal health agencies. Access to network data would be limited to registered health professionals, patients, and qualified organizations, with individually identifiable information and certain confidential business data shielded from public disclosure. It authorizes $5 million for fiscal years 2014–2019, offset by an equivalent reduction in NIH Office of the Director funding, and sets a goal of full implementation by September 30, 2015. The bill was introduced on April 17, 2013, by Rep. John Carter and referred to the House Committee on Energy and Commerce. It did not receive a vote and did not become law.
- Has H.R. 1591 become law?
- Not yet. As of 17 Apr 2013, H.R. 1591 is introduced.
- Who sponsored H.R. 1591?
- H.R. 1591 was sponsored by Rep. John R. Carter [R-TX31] (Republican-TX), with 13 cosponsors.
- What's the latest action on H.R. 1591?
- Introduced (17 Apr 2013).
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