Economic information and modeling report Budget impact model

Epidemiology and eligible population inputs

7 evidence topics · 7 sources

United States all-state closed claims: annual prevalence of diagnosed Huntington's disease per 100,000, 2020 to 2024

“Of the 59 million individuals in the study population, 38.4 million (65.1%) met the continuous enrollment requirement of 12 months during the study period.” (opens the source at this quote in a new tab)

Year	Prevalence rate per 100,000 (95% CI)
2020	“6.7 (6.3-7.1)”
2021	“7.4 (7.0-7.8)”
2022	“7.9 (7.5-8.3)”
2023	“8.4 (8.0-8.8)”
2024	“9.4 (8.9-9.8)”

British Columbia: multisource prevalence of Huntington's disease

“Prevalence of HD was estimated at 13.7 per 100,000 (95% confidence interval [CI]: 12.6-14.8 per 100,000) in the general population, and 17.2 per 100,000 (95% CI: 15.8-18.6 per 100,000) in the Caucasian population.” (opens the source at this quote in a new tab)

United States commercial claims: share of diagnosed people aged 20 years or younger

“Among those diagnosed, 1.18% (n = 44) were identified as 20 years old or less, indicating juvenile onset.” (opens the source at this quote in a new tab)

North American Enroll-HD participants with manifest Huntington's disease: Total Functional Capacity stage

“Most participants were in TFC stages I–III, with the highest proportion (41.3%) of participants in stage II (Table 1).” (opens the source at this quote in a new tab)

Stage (Total Functional Capacity score)	Participants
Stage I (11 to 13)	“n = 845”
Stage II (7 to 10)	“n = 1068”
Stage III (3 to 6)	“n = 540”
Stage IV (1 to 2)	“n = 116”
Stage V (0)	“n = 15”

Pooled incidence of Huntington's disease

“Pooled incidence was 0.48 cases per 100,000 person-years (95% CI, 0.33-0.63).” (opens the source at this quote in a new tab)

United Kingdom primary care: median survival from first recorded diagnosis

“The KM survival curve (Figure 1) shows a median survival time of 12.4 years (95% CI 10.6–15.2).” (opens the source at this quote in a new tab)

Colorado all-payer claims: share of people with Huntington's disease seen by a neurologist in a calendar year

“Approximately half (49.9%) received neurologist care, with 33.8% seeing a MDS during the given calendar year.” (opens the source at this quote in a new tab)