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

Table 1 Questions and response options for Age at Diagnosis, Bone Health and Skin 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
Prebirth	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
4–6 months	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

ISSN: 1750-1172