Table 1 Summary of patient characteristics

Age (n = 38)

Mean 53.3 years, SD +/− 12.6

Gender (n = 38)

Male 79%

Female 21%

Country (n = 34)*

Australia (n = 1)

Austria (n = 2)

Brazil (n = 1)

Canada (n = 2)

Denmark (n = 1)

England (n = 6)

France (n = 2)

Germany (n = 5)

Italy (n = 1)

Netherlands (n = 5)

New Zealand (n = 1)

Portugal (n = 3)

Sweden (n = 2)

Switzerland (n = 1)

Venezuela (n = 1)

Working status (n = 34)*

Full-time 38.2% (n = 13)

Part-time 20.6% (n = 7)

Not working by choice 17.6% (n = 6)

Unable to work due to ATTR-FAP 23.5% (n = 8)

Living status (n = 34)*

Alone 21% (n = 27)

Partner 79% (n = 7)

Nursing home 0% (n = 0)

Smoking history (n = 34)*

Current smoker 0% (n = 0)

Ex-smoker 21% (n = 7)

Non Smoker 79% (n = 27)

Alcohol history (n = 34)*

Consumption of alcohol drinks or beverages

Never 32% (n = 11)

1 to 3 days per month 21% (n = 7)

1 to 2 days per week 26% (n = 9)

3 to 4 days per week 21% (n = 7)

5 to 6 days per week 0% (n = 0)

Every day 0% (n = 0)

ATTR diagnosis (n = 32)**

Biopsy and genetic test 62.5% (n = 20)

Biopsy alone 15.6% (n = 5)

Genetic test alone 15.6% (n = 5)

None 6.3% (n = 2)

ATTR mutation (n = 32)**

p.TTRV30M 46.9% (n = 15)

Non p.TTRV30M 21.9% (n = 7)

Unknown 31.2% (n = 10)

Organ systems involved (n = 32)**

Nerves 78.1% (n = 25)

Heart 59.4% (n = 19)

Gastrointestinal tract 37.5% (n = 12)

Kidneys 18.8% (n = 6)

Eyes 18.8% (n = 6)

Health care visits made before diagnosis of ATTR-FAP (n = 32)**

Median 3, IQR 1-15 (range 1–50)

Number of years before diagnosis of ATTR-FAP (n = 32)**

Median 2 years, IQR 1–4 (range 1–10)

Time since diagnosis (n = 32)**

Median 5,5 years, IQR 4–18 (range 1–31)