The Heartland Newborn Screening Backup Testing Project

By Patrick Hopkins

The Iowa and Missouri Newborn Screening (NBS) Laboratories have been collaborating on a contingency plan project whereby both states would be prepared to backup the other state in the event of a calamity and be prepared to take on the testing of their NBS sample load for as long as necessary for the affected state lab to recover.  Prompt and uninterrupted testing is imperative for our NBS disorders; otherwise a baby could go into a crisis very quickly and suffer major disabilities or die.  If the NBS laboratory had a disaster and was left inoperable for any reason, newborns would still need testing.  This is no simple matter as we receive about 350 newborn samples per day that are ultimately screened for over 50 disorders.
 
If such a calamity would occur, the plan is to utilize the Emergency Management Assistance Compact (EMAC), an emergency assistance process that has been ratified by Congress and which all 50 states are members.  This process would be engaged through the help of State Emergency Management officials.  EMAC essentially allows an agreement between two Governor's declaring that one state will help out the other state that is experiencing the disaster or emergency, and that compensation will eventually be made.
 
The Iowa and Missouri NBS Laboratories, Health Departments, and Emergency Management representatives, have been meeting over the past several months to plan two, one-day emergency drills for the IA and MO newborn screening laboratories, utilizing the EMAC process.  These drills took place on February 25th and March 31st of this year, and were very successful.  IA and MO are the first two states that we know of that have actually conducted such drills with their NBS dried blood spot samples. The IA NBS lab had already been through the process in real life when coming to the aid of the state of Louisiana after hurricane Katrina.  Although proving that this could be done, it became evident that being proactive and having a well thought out and practiced contingency plan in place could assure a much smoother assistance process.

The long-term goal of this project is for IA and MO to provide backup for the entire Heartland Region. Our first steps were to prove that we could back each other up. We would like to eventually conduct emergency drills with all the Heartland States, and even drill a scenario whereby IA and MO would split the testing of one state.  Being able to logistically do that would reduce the impact of taking on a full load of another state for an extended period of time.
 
One of the beneficial spin-offs of these practice drills was the opportunity to look at several quality assurance parameters, by comparing a total of 1,400 newborn samples run in parallel.  It gave us an opportunity to compare pre-analytical, analytical and post analytical parameters at each of the newborn screening labs.  Everything from data entry, test results, and reporting algorithms were compared in parallel on samples that were only two weeks old.  Result findings compared extremely well between the two laboratories, and in some cases may not have compared any better had they been tested in parallel at the same lab on the same day.
 
On April 17th and 18th, the Missouri Public Health Laboratory hosted the second annual Heartland Newborn Screening Workshop with representatives from the eight Heartland states of AR, IA, KS, MO, NE, ND, OK, SD.  The 2-day workshop, which was attended by 27 people from these states, was funded by the Heartland Region Genetics and Newborn Screening Collaborative.  One of the focuses of this year's workshop was emergency preparedness, and it highlighted the results of the Heartland Newborn Screening Backup Testing Project and the details of the results of the first two drills.  Future goals of this project were discussed and plans to conduct a 3-day drill this fall are already in place.

The workshop also included two excellent guest speakers who are experts in the field of NBS disorders, and a family with their infant who had been identified through Missouri NBS as having Isovaleric Acedemia (IVA) and was treated before critical symptoms were allowed to occur.  The workshop was an excellent opportunity for Heartland state NBS programs to collaborate, share best practices and exchange ideas for advancing and improving NBS across the Heartland region.  See the "Newborn Screening Has Life Saving Results" article for a related story.