One of our major projects over the past year has been extensive research of every state’s Newborn Screening program. Lesa Brackbill started this research during her advocacy work in Pennsylvania, and has since expanded this exploration to include all 50 U.S. states and more. The research revealed that not every state reports the number of conditions on their panel the same way. This is something we’re looking to rectify so that the counts are standardized across the country. Furthermore, some organizations report data differently for the same state. Sometimes it’s because the conditions are counted differently; other times, the count is simply out of date. All that is to say, we’ve spent a great deal of time ensuring that we have the most accurate data possible.
This information has never been displayed all in one place. Because we believe that leukodystrophy advocates need to have it at their fingertips, we created our own spreadsheet as a resource to assist you in your advocacy!
You can view the spreadsheet, LDNBS Data for Advocate Use, here.
Here’s a preview:
For each state you will find things like the “Screening Status” for certain leukodystrophies, “Known Advocate Activity” in the state, “NBS Fee,” and much more. If you hover over the cells with a black triangle in the corner, you will find notes from us as to why that information matters.
Some of this data is also found on each state’s page on our website. But this resource offers another way to review data if you like spreadsheets or if you want extra information. This is the place to find it. Furthermore, having this information compiled in one central location may be helpful for those looking for a broad overview of newborn screening in the states.
Can’t find what you’re looking for? If you have an idea for helpful information that might be included, let us know! Also reach out to us if you know of any information that need updating. Email email@example.com with your ideas.
As information changes, or as we find more useful data, we will revise the spreadsheet as well as our website.
We hope this culmination of research proves helpful as you advocate in your state!