Table 1.
Characteristics of survey respondents
| Diagnosed (symptomatic) | Gene positive (asymptomatic) | Primary caregivers | Total | |||||
| n | % | n | % | n | % | n | % | |
| n | 20 | 27.4% | 22 | 30.1% | 31 | 42.5% | 73 | 100.0% |
| Female | 13 | 65.0% | 19 | 86.4% | 28 | 90.3% | 60 | 82.2% |
| Age 50 or Older | 15 | 75.0% | 7 | 31.8% | 21 | 67.7% | 43 | 58.9% |
| Geography | ||||||||
| New England (CT, ME, MA, NH, RI, VT) | 5 | 25.0% | 1 | 4.5% | 3 | 9.7% | 9 | 12.3% |
| Mid-Atlantic (NJ, NY, PA) | 4 | 20.0% | 3 | 13.6% | 5 | 16.1% | 12 | 16.4% |
| Mid-Atlantic (DE, DC, FL, GA, MD, NC, SC, VA, WV) | 1 | 5.0% | 7 | 31.8% | 5 | 16.1% | 13 | 17.8% |
| Midwest 2 (IN, IL, MI, OH, WI) | 4 | 20.0% | 3 | 13.6% | 3 | 9.7% | 10 | 13.7% |
| Midwest 2 (IA, KS, MN, MO, NE, ND, SD) | 0 | 0.0% | 2 | 9.1% | 1 | 3.2% | 3 | 4.1% |
| Southeast (AL, KY, MS, TN) | 1 | 5.0% | 0 | 0.0% | 5 | 16.1% | 6 | 8.2% |
| South (AR, LA, OK, TX) | 0 | 0.0% | 2 | 9.1% | 2 | 6.5% | 4 | 5.5% |
| Mountain (AZ, CO, ID, NM, MT, UT, NV, WY) | 0 | 0.0% | 0 | 0.0% | 1 | 3.2% | 1 | 1.4% |
| Pacific (AK, CA, HI, OR, WA) | 5 | 25.0% | 4 | 18.2% | 6 | 19.4% | 15 | 20.5% |
| Education: Bachelor’s Degree or Above | 7 | 35.0% | 15 | 68.2% | 19 | 61.3% | 41 | 56.2% |
| Past Participation in HD Research | 10 | 50.0% | 17 | 77.3% | 21 | 67.7% | 48 | 65.8% |
| Past Participation in Non-HD Research | 4 | 20.0% | 0 | 0.0% | 3 | 9.7% | 7 | 9.6% |
| Past Support Group Attendance | ||||||||
| Yes, within the past year | 9 | 45.0% | 5 | 22.7% | 16 | 51.6% | 30 | 41.1% |
| Yes, previous to the past year | 4 | 20.0% | 7 | 31.8% | 5 | 16.1% | 16 | 21.9% |
| Never | 7 | 35.0% | 10 | 45.5% | 10 | 32.3% | 27 | 37.0% |