Osteoporosis in adults with cerebral palsy

Life expectancy for the 400 000 adults with cerebral palsy (CP) in the USA is increasing. Although there is a perception of increased fractured rate in the adult with CP, it has not been well studied. Low bone mineral density is found in more than 50% of adults with a variety of disabilities, including CP. Dual-energy X-ray absorptiometry scanning is commonly used to assess bone mineral density, but is limited by positioning and other artifacts in adults with CP. Novel scanning regions of interest, such as the distal femur, are not yet standardized in adults. Nutritional assessment and physical activity, the basis of most fracture prevention programs, are difficult to do in the adult with CP. A better understanding of the 'muscle-bone unit' physiology and its exploitation may lead to better treatment modifications. Clinical research trials with bisphosphonates (e.g. pamidronate), estrogen, selective estrogen receptor modulators, parathyroid hormone analogs, and growth hormone need to be targeted to the adult with CP. Longitudinal studies of fracture risk factors, genetic research in bone and neuromuscular biology, and the development of treatment surrogates for physical activity are additional areas of needed expertise. This could be facilitated by an adult CP registry and the centralization of clinical research efforts.