Table 1

Descriptive statistics and health conditions in the past year among International Fragile X Premutation Registry registrants who self-identify as premutation carriers (as of January 2022)

N%N%
SexCountry of residence
Female51789.4Argentina30.5
Male6010.4Australia6511.2
Not reported10.2Belgium10.2
Canada162.8
Race/EthnicityColombia50.9
White45888.6Costa Rica10.2
Hispanic214.1Croatia10.2
More than one race163.1Denmark20.3
Asian91.7Finland10.2
African or Black91.7France20.3
Native/Indigenous71.4Georgia20.3
Unknown/Not reported61.2Greece10.2
Ireland10.2
EducationItaly50.9
Bachelor’s degree (BA, BS)15426.6The Netherlands20.3
Master’s degree (MA, MS, MSW, MBA)12822.1New Zealand61.0
Partial college5910.2Norway20.3
Associates degree (AA, AS)457.8Poland10.2
Professional degree (MD, DDS, JD)376.4Russia20.3
High school diploma315.4Slovenia10.2
Doctorate degree (PhD, EdD)234.0South Africa10.2
9th–12th grade—no diploma71.2Spain10.2
8th grade or less30.5Switzerland10.2
GED or alternative credential20.3UK122.1
Unknown or prefer not to answer8915.4USA44176.3
Not reported20.3
Household income (in US$)
<10 000101.7Marital status
10 000–19 999101.7Married36463.0
20 000–34 999223.8Divorced386.6
35 000–49 999305.2Living with a partner345.9
50 000–74 999579.9Never been married345.9
75 000–99 9996110.6Separated81.4
100 000–149 9998414.5Widowed81.4
150 000–199 999437.4Prefer not to answer50.9
200 000–299 999264.5Unknown/Not reported8715.1
300 000 or more376.4
Unknown or not reported19834.2
General healthNeurological conditions
Males (%)Females (%)Males (%)Females (%)
Hypertension41.218.1Numbness or tingling47.128.4
Sleep disorder5.914.6Balance problems58.820.1
Bladder or bowel incontinence11.227.5Migraine headache7.825.6
Sexual dysfunction9.633.3Chronic pain17.620.1
Sleep apnoea27.56.9Vertigo or dizziness19.617.6
Cardiac/Heart disease9.84.1Intention tremor49.011.9
Type II diabetes11.83.7Resting tremor25.58.7
Respiratory disease2.03.7Walking problems35.37.1
Hypotension2.03.4Hearing loss31.47.6
Alcohol/Substance use disorder0.03.0Postural tremor27.56.9
Cancer3.91.8Swallowing or choking problems23.57.1
Kidney disease1.12.0Fibromyalgia3.99.4
Liver disease0.00.7Slowness of movements37.34.1
Type 1 diabetes2.00.5Repeated falls19.65.0
N51437Use of cane or walker25.51.8
Head tremor11.83.2
Reproductive healthDementia or Alzheimer’s disease7.81.4
Irregular or skipped periods46.7Use of wheelchair9.80.7
Mood swings37.1Parkinson’s/Parkinsonism5.90.7
Hot flashes36.4None13.736.4
Fertility problems33.9FXTAS58.35.6
Osteopenia or osteoporosis10.5N51437
None27.9
POI/Premature menopause34.6
N437
Males (%)Females (%)Males (%)Females (%)
Psychiatric/Psychological conditionsAutoimmune diseases
Anxiety15.744.6Hypothyroidism/Hashimoto’s disease4.015.8
Depression21.633.1Inflammatory bowel disease0.06.9
Sleep disorder9.819.5Psoriasis/Psoriatic arthritis2.03.0
Stress-related disorderRheumatoid arthritis2.02.7
ADHD3.98.7Coeliac disease0.02.5
Obsessive-compulsive type disorder0.08.3Hyperthyroidism/Graves’ disease0.02.1
Specific learning disorder2.02.5Systemic lupus erythematosus0.01.1
Language/Communication disorder5.92.1Sjögren’s syndrome0.00.9
Eating disorder0.02.5Pernicious anaemia0.00.5
Alcohol or substance use problem0.02.5Autoimmune vasculitis0.00.5
Bipolar disorder or mania0.01.8Multiple sclerosis0.00.2
Intellectual/Developmental disorder3.91.1Addison’s disease0.00.0
Autism spectrum disorder0.01.0Myasthenia gravis0.00.0
Personality disorder0.01.0Prefer not to answer2.00.0
Psychosis or schizophrenia0.00.0None70.661.1
Tourette’s/Tic disorder0.00.0N51437
Prefer not to answer0.00.0
None49.036.6
N51437