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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 without the cost of a new registry. She cautioned that both datasets have limits: hospital discharge data covers inpatient discharges from 26 hospitals and four specialty hospitals but excludes primary‑care and outpatient clinics, and it tracks discharges rather than incidence; claims data may record procedures or services but not reliably indicate diagnoses and excludes self‑pay patients.
“Hospital discharge data could give us information, but it'd probably be incomplete,” Tilley said, and CHIS “is a good resource to evaluate the cost for procedures, but not as good of a resource to figure out diagnosis or the number of diagnosis or the rate of diagnosis.”
Legislators and staff discussed prior negotiations with Dartmouth and the Rare Disease Advisory Council. Tilley said the department has worked with Dartmouth researchers in the past and continues to coordinate with the Rare Disease Advisory Council, which has been split on whether a registry is the best use of state resources.
Committee members indicated interest in alternatives that would reduce the fiscal impact. Representative Woods and other legislators asked whether existing registries, such as the cancer registry, could be leveraged to add an ALS module; Tilley said aligning with existing registry infrastructure would still be costly because of required HIPAA compliance and platform work but that it is a line of inquiry worth pursuing.
The department did not take a formal vote on creating a registry; it reported continuing internal analysis and further engagement with stakeholders.
