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	%
Sex			Country of residence
Female	517	89.4	Argentina	3	0.5
Male	60	10.4	Australia	65	11.2
Not reported	1	0.2	Belgium	1	0.2
			Canada	16	2.8
Race/Ethnicity			Colombia	5	0.9
White	458	88.6	Costa Rica	1	0.2
Hispanic	21	4.1	Croatia	1	0.2
More than one race	16	3.1	Denmark	2	0.3
Asian	9	1.7	Finland	1	0.2
African or Black	9	1.7	France	2	0.3
Native/Indigenous	7	1.4	Georgia	2	0.3
Unknown/Not reported	6	1.2	Greece	1	0.2
			Ireland	1	0.2
Education			Italy	5	0.9
Bachelor’s degree (BA, BS)	154	26.6	The Netherlands	2	0.3
Master’s degree (MA, MS, MSW, MBA)	128	22.1	New Zealand	6	1.0
Partial college	59	10.2	Norway	2	0.3
Associates degree (AA, AS)	45	7.8	Poland	1	0.2
Professional degree (MD, DDS, JD)	37	6.4	Russia	2	0.3
High school diploma	31	5.4	Slovenia	1	0.2
Doctorate degree (PhD, EdD)	23	4.0	South Africa	1	0.2
9th–12th grade—no diploma	7	1.2	Spain	1	0.2
8th grade or less	3	0.5	Switzerland	1	0.2
GED or alternative credential	2	0.3	UK	12	2.1
Unknown or prefer not to answer	89	15.4	USA	441	76.3
			Not reported	2	0.3
Household income (in US$)
<10 000	10	1.7	Marital status
10 000–19 999	10	1.7	Married	364	63.0
20 000–34 999	22	3.8	Divorced	38	6.6
35 000–49 999	30	5.2	Living with a partner	34	5.9
50 000–74 999	57	9.9	Never been married	34	5.9
75 000–99 999	61	10.6	Separated	8	1.4
100 000–149 999	84	14.5	Widowed	8	1.4
150 000–199 999	43	7.4	Prefer not to answer	5	0.9
200 000–299 999	26	4.5	Unknown/Not reported	87	15.1
300 000 or more	37	6.4
Unknown or not reported	198	34.2

General health			Neurological conditions
	Males (%)	Females (%)		Males (%)	Females (%)
Hypertension	41.2	18.1	Numbness or tingling	47.1	28.4
Sleep disorder	5.9	14.6	Balance problems	58.8	20.1
Bladder or bowel incontinence	11.2	27.5	Migraine headache	7.8	25.6
Sexual dysfunction	9.6	33.3	Chronic pain	17.6	20.1
Sleep apnoea	27.5	6.9	Vertigo or dizziness	19.6	17.6
Cardiac/Heart disease	9.8	4.1	Intention tremor	49.0	11.9
Type II diabetes	11.8	3.7	Resting tremor	25.5	8.7
Respiratory disease	2.0	3.7	Walking problems	35.3	7.1
Hypotension	2.0	3.4	Hearing loss	31.4	7.6
Alcohol/Substance use disorder	0.0	3.0	Postural tremor	27.5	6.9
Cancer	3.9	1.8	Swallowing or choking problems	23.5	7.1
Kidney disease	1.1	2.0	Fibromyalgia	3.9	9.4
Liver disease	0.0	0.7	Slowness of movements	37.3	4.1
Type 1 diabetes	2.0	0.5	Repeated falls	19.6	5.0
N	51	437	Use of cane or walker	25.5	1.8
			Head tremor	11.8	3.2
Reproductive health			Dementia or Alzheimer’s disease	7.8	1.4
Irregular or skipped periods	–	46.7	Use of wheelchair	9.8	0.7
Mood swings	–	37.1	Parkinson’s/Parkinsonism	5.9	0.7
Hot flashes	–	36.4	None	13.7	36.4
Fertility problems	–	33.9	FXTAS	58.3	5.6
Osteopenia or osteoporosis	–	10.5	N	51	437
None	–	27.9
POI/Premature menopause	–	34.6
N		437

	Males (%)	Females (%)		Males (%)	Females (%)
Psychiatric/Psychological conditions			Autoimmune diseases
Anxiety	15.7	44.6	Hypothyroidism/Hashimoto’s disease	4.0	15.8
Depression	21.6	33.1	Inflammatory bowel disease	0.0	6.9
Sleep disorder	9.8	19.5	Psoriasis/Psoriatic arthritis	2.0	3.0
Stress-related disorder			Rheumatoid arthritis	2.0	2.7
ADHD	3.9	8.7	Coeliac disease	0.0	2.5
Obsessive-compulsive type disorder	0.0	8.3	Hyperthyroidism/Graves’ disease	0.0	2.1
Specific learning disorder	2.0	2.5	Systemic lupus erythematosus	0.0	1.1
Language/Communication disorder	5.9	2.1	Sjögren’s syndrome	0.0	0.9
Eating disorder	0.0	2.5	Pernicious anaemia	0.0	0.5
Alcohol or substance use problem	0.0	2.5	Autoimmune vasculitis	0.0	0.5
Bipolar disorder or mania	0.0	1.8	Multiple sclerosis	0.0	0.2
Intellectual/Developmental disorder	3.9	1.1	Addison’s disease	0.0	0.0
Autism spectrum disorder	0.0	1.0	Myasthenia gravis	0.0	0.0
Personality disorder	0.0	1.0	Prefer not to answer	2.0	0.0
Psychosis or schizophrenia	0.0	0.0	None	70.6	61.1
Tourette’s/Tic disorder	0.0	0.0	N	51	437
Prefer not to answer	0.0	0.0
None	49.0	36.6
N	51	437