Lab Matters Fall 2020 - Page 26

NEWBORN SCREENING from pg . 23
public . Additionally , these data are used for daily briefings to leadership within CDC and HHS as well as members of the White House COVID Taskforce . State reports are also issued to governors for an in-depth view into their states progress or complications .

Improving Outcomes of Infants with Severe Combined Immunodeficiency

by Alissa Huston , MPH , director , Specialized Projects , Immune Deficiency Foundation and Ruthanne Sheller , MPH , senior specialist , NewSTEPs
This situational awareness helps scientific and policy leaders identify hotspots and dictate the necessary responses . These data also informs whether or not schools or businesses can safely be opened within a community , or where additional resources need to be allocated .
Challenges
While this technical solution simplifies the receipt of information by CDC , it is still quite cumbersome on the part of the health department ; while they may be equipped to receive data electronically , not all testing sites are equipped to send that way . This epidemic is unlike other public health emergencies in that huge testing volumes are coming from unconventional sources — nursing homes , meat packing plants , correctional facilities — who may be working with antiquated systems .
Complete overhauls in technology and expertise don ’ t happen overnight , especially during a crisis . Many of these facilities are still sending their data to public health departments via fax or spreadsheets . If a state receives 30 % of its data via ELR , that means they are still receiving an overwhelming amount of data that have to be manually entered and compiled . Many health departments are functioning on a 24-hour cycle and conducting data entry around the clock . Some jurisdictions have grappled with urgently needing an influx of resources to help with response efforts , but also face hiring freezes due to the economic crisis .
There is great uncertainty about what lies ahead and how our country will emerge from this crisis , but also , perhaps , a glimmer of hope ; there are extraordinary people behind the scenes , working diligently in laboratories and health departments across the country doing everything they can to keep us safe and informed . n
Despite progress with early identification of babies with Severe Combined Immunodeficiency ( SCID ) through newborn screening ( NBS ), the SCID community continues to face a number of significant challenges , including :
• Disparities in knowledge and care for patients with SCID in rural and underserved communities
• Generally low awareness and knowledge about SCID and SCID NBS for all stakeholders
• Lack of coordinated long-term follow-up strategies for SCID .
In August 2018 , the Immune Deficiency Foundation ( IDF ), in partnership with APHL and RTI International , received a $ 4 million grant from the Health Resources and Services Administration ( HRSA ) to support SCID screening and education . Through this partnership , SCID Compass was developed to serve as a hub of information and resources for parents , caregivers and healthcare professionals to navigate the next steps after receiving an abnormal SCID screen . Since its inception , SCID Compass has :
• Ensured all 53 NBS programs in the United States and associated territories offer universal screening for SCID
• Launched a website for families of children with SCID
• Collected data related to SCID from parents , healthcare providers and public health professionals
• Established a telehealth support group for parents .
In August 2020 , SCID Compass received an additional $ 2.97 million one-year grant extension to support the continuation and further development of SCID initiatives . APHL will continue to support IDF in increasing education and awareness of NBS for SCID , linking families with children with SCID to clinical centers to confirm diagnoses , and implementing mechanisms and protocols to obtain long-term follow-up information on clinical outcomes of infants identified by NBS . Over the next year , APHL will provide technical assistance and financial support to state NBS programs seeking to improve or enhance their SCID NBS capabilities and capacities , and will launch a quality improvement project aimed to reduce unnecessary follow-up and diagnostic activities in premature infants . n
24 LAB MATTERS Fall 2020
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