What is the Recommended Uniform Screening Panel?
The Recommended Uniform Screening Panel (RUSP) is a national guideline for newborn screening (NBS). It consists of a list of conditions (PDF - 95 KB) for which the U.S. Secretary of Health and Human Services (HHS) recommends all newborns receive screening.
The RUSP divides these conditions into two main groups: core and secondary conditions.
- Core conditions: The HHS Secretary recommends including these in every NBS program. Newborn screening is specifically designed to assess whether your baby might have these conditions.
- Secondary conditions: These may be found while screening for a core condition. Although NBS is not specifically designed to assess whether your baby might have these conditions, it sometimes finds babies likely to have them.
States use the RUSP to help them decide which conditions to include in their NBS programs.
Who Decides What Conditions Are on the RUSP?
Multiple people work together to decide what conditions belong on the RUSP:
- Secretary of HHS: The Secretary ultimately adds conditions to the RUSP. He or she is a member of the U.S. government.
- Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC): The ACHDNC is a Committee of doctors, scientists, parents, ethicists, and researchers. This Committee helps the Secretary decide which conditions should be on the RUSP by giving advice and making recommendations.
Can the RUSP Change?
Yes. Progress in screening and medical treatments can lead to changes in the RUSP. The Secretary may add a new condition to the RUSP if there is enough evidence that newborns would benefit from screening for it.
Adding a new condition to the RUSP is a multistep process:
- First, someone nominates the condition to the RUSP. Any person or group(s) can do this by completing a nomination package.
- A specialized workgroup of the ACHDNC reviews this package and presents a summary to the full ACHDNC.
- Based on the summary, the ACHDNC votes on whether the process should continue to the next step.
- If the ACHDNC votes ‘yes,’ then a group of experts outside of the ACHDNC gathers detailed data on how screening and treatment for the condition affect newborns, the population, and the public health system. These independent experts write a report about what they learn.
- The ACHDNC reads and discusses the report, then votes on whether to recommend adding the condition to the RUSP.
- If the ACHDNC votes ‘yes,’ it sends a letter to the Secretary recommending adding the condition to the RUSP.
- The Secretary reviews the ACHDNC’s recommendation and makes a final decision on whether to add the condition to the RUSP.
Learn more about updating the RUSP.
Updates to the RUSP are just the first phase of progress in NBS. Changes to the RUSP can lead to a second phase of changes at the state level with specific newborn screening panels. When a condition is added to the RUSP, it takes time for states to add the new condition to their newborn screening panels as each state has its own process.
Some states need approval for adding a condition from their Legislature, while others have newborn screening advisory committees who help the state Department of Health determine if a new condition should be screened for all babies born in the state. States may need to get more funding; hire more people; educate hospital, midwife, clinic and specialist staff; upgrade their screening equipment; and/or make sure the screen works properly before having a new condition added to their panel.
Because these steps can take months or years, your state may not yet screen for conditions new to the RUSP.
Will My Baby Be Screened for All of the Conditions on the RUSP?
The RUSP is a guideline that helps states decide which conditions to include on their newborn screening panels. Each state makes its own decision about what their panels will include (or not include). Most states screen for most conditions on the RUSP. Some also screen for conditions not on the RUSP. Your baby will be screened for all of the conditions on your state’s newborn screening panel.
To learn more about screening in your state, please visit the State pages.