Faculty / Content approved by
Mercedes Rodriguez Celin, Pediatrician-Genetics Fellow, Medical College of Wisconsin, USA
Duration: 17 minutes
Summary: This video provides an introduction into the topic of Pain in OI, in particulare chronic pain. It is for many people the most important symptom impacting quality of life with OI. The video is directed to people with OI, healthcare providers as well as researchers.
Key Take Aways:
1. Pain is a complex topic for many people with OI.
2. Understand the topic of pain, helps to manage pain.
3. More research is needed to understand the causes and manage the impact of pain to Quality of Life.
Reference / Published literature:
- Rodriguez Celin M, Kruger KM, Caudill A, Murali CN, Nagamani SCS; Members of the Brittle Bone Disorders Consortium (BBDC); Smith PA, Harris GF. A multicenter study to evaluate pain characteristics in osteogenesis imperfecta. Am J Med Genet A. 2023 Jan;191(1):160-172. doi: 10.1002/ajmg.a.63009. Epub 2022 Oct 22. PMID: 36271817; PMCID: PMC10399129.
- Rodriguez Celin M, Simon JC, Krzak JJ, Fial AV, Kruger KM, Smith PA, Harris GF. Correction to: Do Bisphosphonates Alleviate Pain in Children? A Systematic Review. Curr Osteoporos Rep. 2022 Aug;20(4):226. doi: 10.1007/s11914-020-00637-9. Erratum for: Curr Osteoporos Rep. 2020 Oct;18(5):486-504. doi: 10.1007/s11914-020-00621-3. PMID: 33119810.
- Swezey T, Reeve BB, Hart TS, Floor MK, Dollar CM, Gillies AP, Tosi LL. Incorporating the patient perspective in the study of rare bone disease: insights from the osteogenesis imperfecta community. Osteoporos Int. 2019 Feb;30(2):507-511. doi: 10.1007/s00198-018-4690-7. Epub 2018 Sep 6. PMID: 30191258; PMCID: PMC6449303.
- Kruger KM, Caudill A, Rodriguez Celin M, Nagamani SCS, Shapiro JR, Steiner RD, Bober MB, Hart T, Cuthbertson D, Krischer J, Byers PH, Durigova M, Glorieux FH, Rauch F, Sutton VR, Lee B, Rush ET, Smith PA, Harris GF. Mobility in osteogenesis imperfecta: a multicenter North American study. Genet Med. 2019 Oct;21(10):2311-2318. doi: 10.1038/s41436-019-0491-4. Epub 2019 Mar 28. PMID: 30918359; PMCID: PMC7401984.
- Tucker-Bartley A et al. Neurosci Biobehav Rev. 2021 May
- Mueller et al. Orphanet Journal of Rare Diseases (2018) 13:158
- Boitor M. et al. Canadian Journal of Pain 2019
Acknowledgments
Patients and families
Members of the BBDC
OIF
OIFE