Adults with osteogenesis imperfecta: Clinical characteristics of 151 patients with a focus on bisphosphonate use and bone density measurements
Luuk J.J. Scheres,
Fleur S. van Dijk,
Arjan J. Harsevoort,
Atty T.H. van Dijk,
Anne Marieke Dommisse,
Guus J.M. Janus,
Anton A.M. Franken
Affiliations
Luuk J.J. Scheres
Expert Center for adults with Osteogenesis Imperfecta, Isala Hospital, Zwolle, The Netherlands
Fleur S. van Dijk
Expert Center for adults with Osteogenesis Imperfecta, Isala Hospital, Zwolle, The Netherlands; Department of Clinical Genetics, University Medical Center Groningen, Groningen, The Netherlands; North West Thames Regional Genetics Service, Ehlers-Danlos Syndrome National Diagnostic Service London, North West Health Care University NHS Trust, Harrow, Middlesex, UK
Arjan J. Harsevoort
Expert Center for adults with Osteogenesis Imperfecta, Isala Hospital, Zwolle, The Netherlands
Atty T.H. van Dijk
Expert Center for Skeletal Dysplasia, Wilhelmina Children's Hospital, University Medical Center Utrecht, The Netherlands
Anne Marieke Dommisse
Expert Center for adults with Osteogenesis Imperfecta, Isala Hospital, Zwolle, The Netherlands
Guus J.M. Janus
Expert Center for adults with Osteogenesis Imperfecta, Isala Hospital, Zwolle, The Netherlands
Anton A.M. Franken
Expert Center for adults with Osteogenesis Imperfecta, Isala Hospital, Zwolle, The Netherlands; Corresponding author at: Department of Endocrinology, Isala Hospital, Zwolle, The Netherlands.
An expert center for adults with Osteogenesis Imperfecta (OI) has been founded at the Isala Hospital in Zwolle, the Netherlands to achieve optimal care for adults with OI. Clinical data such as patient history, Dual Energy X-ray Absorptiometry measurements and laboratory findings are collected with patient consent. This study provides an overview of clinical characteristics of the patients who visited the clinic during its first 5 years, a total of 151 patients. In this study, we focus on bisphosphonate use and bone density measurements at time of presentation at the expert center. As such, insight into the natural history of OI in adults will be increased. Analysing the data of a large group of adults with this rare disorder within a national expert center will allow detailed exploration of the course of OI over time. Keywords: Osteogenesis imperfecta, Adult, Expert center, Fractures, Bisphosphonates, Bone density
