OBJECTIVES: To assess characteristics of a population with SB, treated in a tertiary reference center. METHODS: Participants were recruited from the tertiary clinic database or when initiating care in the clinic.  Participants had to have a verifiable SB diagnosis, and a cognitive ability to respond to the questionnaire or a caregiver able to answer questions.  Data were double-entered with queries issued to patients to improve data quality.  Descriptive analyses were used to summarize data. RESULTS: Of 88 participants, 49 were male (44%), 38 female (56%), mean (±SD) age was 28.7±13.5 years (range: 3-68 years). In 15 participants (17%) the lesion was located in the sacral region/occult, in 55 lumbar (63%), and in 18 (20%) at thoracic/cervical level. The majority had myelomeningocele (n=62), 19 had meningocele, 2 had lipomenigocele and 5 had occult lesion; 59 (67%) had a hydrocephalus, 58 of those were shunted. Of 88, 63% always used a wheelchair, 26% answered they used it often, whereas 11% never used wheelchairs. 20 participants needed splints on feet/legs, 10 were able to walk using a walking aid. Those with hydrocephalus needed a wheelchair at younger age, compared to those without hydrocephalus (5.7 vs. 15.3 years). Of 71 adults, more than 50% had BMI >25 (overweight), in 20% BMI was >30 (obese). The most frequent comorbidities were abnormal bladder function/incontinence (90.9%), paralysis (73.9%), hydrocephalus (67.1%), orthopedic problems (56.8%) and loss of ambulation (51.1%). Less than 50% reported Arnold Chiari malformation (47.7%), gastrointestinal/bowel disorders (46.6%), skin integrity/pressure sores (37.5%), latex allergic reaction (36.4%), and eye problems (31.8%). Among all participants, 54 lived with their parents, 13 with a partner, and 11 alone. CONCLUSIONS: Results indicate that SB may have substantial impact on general health, with  large number of comorbidities that require lifelong treatment.  Such treatment contributes to the overall burden associated with SB.