EARLY CAREER INVESTIGATOR SPOTLIGHT
What are your research goals?
Dr. Robinson: My long-term research goal is to advance precision health approaches for individuals with skeletal dysplasias by defining disease phenotypes, identifying mechanisms of morbidity, and developing targeted therapeutic strategies that improve biological, psychological, and functional outcomes. A major focus of my program is to elucidate the mechanisms underlying chronic pain in OI and to develop evidence-based approaches to prevent and treat pain in individuals with primary bone disorders.
How are you involved with the RDCRN?
Dr. Robinson: My involvement with the RDCRN began during my postdoctoral fellowship with Dr. Frank Rauch at Shriners Children's Canada. During that time, I led research demonstrating that bisphosphonate therapy can be safely discontinued at final height in individuals with OI, helping inform long-term treatment strategies for this population. This work was presented at the Conference on Clinical Research for Rare Diseases hosted by the RDCRN. I have since become an independent investigator and participate in the scientific leadership of the consortium project “Reducing Pain Interference Among Adults with Osteogenesis Imperfecta,” a large randomized controlled trial evaluating mindful self-compassion versus relaxation training to reduce pain interference in adults with OI, alongside BBDC principal investigator Dr. Brendan Lee and trial co-principal investigator Dr. Eric Storch.
How does participating in the network support your long-term development?
Dr. Robinson: The RDCRN carried me from trainee to independent investigator. Its mentorship and multi-site infrastructure let me take pilot findings on pain interference in OI and scale them into a funded, network-wide randomized controlled trial, a trajectory that would not have been possible outside the consortium. Beyond this trial, I have contributed to several BBDC-led publications on psychosocial and quality-of-life outcomes in OI, which has broadened both my collaborator network and my methodological skill set. It was, in fact, BBDC-driven work that identified chronic pain as an unmet priority in OI research, directly shaping the focus of my research program. The consortium has also enabled me to work closely with the Osteogenesis Imperfecta Foundation (OIF), in partnership with the Osteogenesis Imperfecta Federation Europe (OIFE), to design and deliver the OI Pain Survey, extending my research reach to the global OI patient community. Looking ahead, this foundation positions me to lead the next generation of pain-focused therapeutic trials in OI—the very priority that individuals with OI identified through our survey work—and to mentor the trainees who will carry that work forward within the network.
