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DHHS weighs alternatives to stand‑alone ALS registry after $750,000 fiscal note; department examines existing datasets
Summary
DHHS told the oversight committee that a full, HIPAA‑compliant ALS registry would likely cost about $750,000 to build, and officials are exploring use of hospital discharge and all‑payer claims data as lower‑cost options while continuing engagement with the Rare Disease Advisory Council and Dartmouth researchers.
Associate Commissioner Tricia Tilley told the Health, Human Services and Elderly Affairs committee that HB-related proposals to create an ALS registry produced a sizable fiscal note to build a new, HIPAA‑compliant system — “in this case, we came in at around 750,000, give or take some funds to build that system.”
Tilley said the department is reviewing its existing data assets — hospital discharge data (HDD) and all‑payer claims/CHIS — to assess whether they could provide useful information for tracking ALS…
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