Pain Study in Osteogenesis Imperfecta

On behalf of the Osteogenesis Imperfecta Study Group within the Core Registry platform we invite you to participate in the upcoming “Pain Study in Osteogenesis Imperfecta (OI).” This initiative seeks to comprehensively evaluate chronic and acute pain experiences and assess the effect of various treatments among patients diagnosed with Osteogenesis Imperfecta.

Your involvement in this study is pivotal to its success. We invite you to contribute to the Core Registry by providing essential patient information, along with more detailed data within the OI condition-specific module.

In our pursuit to evaluate pain and quality of life, we will utilize a range of Patient-Reported Outcome Measures (PROMs) including the Brief Pain Inventory (BPI), Neuropathic Pain Symptom Inventory (NPSI), EQ-5D, and WHO ICF Mobility. These instruments can be completed by both clinicians and patients. Patients, with their consent, are also encouraged to register on the platform to view and update their information, as well as to complete the relevant PROMs and Patient-Reported Outcomes (PROs). Specific PROs tailored to OI have been meticulously crafted, covering relevant aspects such as current medications and recent healthcare professional interactions.

Should you have any inquiries, suggestions, or wish to become actively involved in our study group, we encourage you to reach out to us via registries@lumc.nl or consider attending our regular drop-in sessions, where we provide technical assistance and support.

We wish to express our gratitude to all contributors to the module and the Pain Study, who will be acknowledged in any publications stemming from this collaborative effort. Please find our general instructions for publication. If there are multiple reporters in your institution, please feel free to connect on more details.