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Table 1 Questions and response options for Age at Diagnosis, Bone Health and Skin Disorders

From: Development of newborn screening connect (NBS connect): a self-reported patient registry and its role in improvement of care for patients with inherited metabolic disorders

Question and Answers for the data sets
How old was the affected person at diagnosis?
 Unknown 10 - 12 months 9 years 18 years
 Prebirth 1 year 10 years 19 years
2 years 11 years 20 years
 less than 1 week 3 years 12 years 21 years
 1 - 2 weeks 4 years 13 years 22 years
 3 - 4 weeks 5 years 14 years 23 years
 1 - 3 months 6 years 15 years 24 years
 4–6 months 7 years 16 years 25 years
8 years 17 years  > 25 years
 7 - 9 months    
Has the affected person had bone density testing (DXA) done within the last year?
 Yes - Normal result
 Yes - Abnormal result
 Unknown
 No
Has the affected person ever been diagnosed with a bone disorder? (check all that apply)
 No
 Unknown
 Bone fractures
 Curvature of the spine
 Osteomalacia
 Osteopenia
 Osteoporosis
 Rickets
 Scoliosis
 Other
Has the affected person had symptoms of a skin condition? (check all that apply)
 No
 Unknown
 Herpes Simplex Virus
 Herpes Zoster
 Hives
 Psoriasis
 Eczema
 Rosacea
 Acne
 Warts
 Seborhheic Dermatitis
 Other