CRMO is a rare predominantly pediatric autoinflammatory bone disease of unknown etiology. Typical onset is between 7-10 years of age with an average two-year delay in diagnosis due to multiple factors including the lack of awareness within the medical community and the absence of a clear diagnostic test. Currently no targeted FDA-approved therapeutics exist for CRMO. Reduced physical mobility, intense and persistent bone pain, frequent doctor visits/hospitalizations and immunosuppressive medications lead to significant negative impacts on quality of life. Research progress is limited by the small number of investigators, and the lack of: larger scale systematic biosample collection, access to funding for research activities, communication platforms for sharing information and critical patient engagement. The CRMO Collaborative Research Network Conference 2020 will be the first big step towards building this new patient-focused international research network, developing and driving shared research priorities by including patient/parent stakeholders, and additional investigators through the Collaborative Network Approach. This first ever patient-led meeting dedicated solely to CRMO will bring patients together with scientists. Instead of patients as passive participants, we will promote strong active patient/parent participation to fuel a patient-driven research program through specific programming involving partners from CARRA and CoRDS. Through multiple interactive speaker panel sessions and workgroups involving all stakeholders focusing on questions that matter to CRMO patients, we will build community, educate and increase awareness of this rare disease. Conference activities will educate and empower patients/parents to engage in the research enterprise, and allow the Foundation to develop patient-centric priorities and a program of future work, defining and aligning research priorities between all stakeholders. In-person interactions will foster new and deeper relationships between representatives of different stakeholder groups to promote productive partnerships built on trust to ensure sustained collaboration. The meeting will increase awareness and exposure of CRMO to identify and recruit young post-docs and investigators interested in studying CRMO. Increased exposure and education of healthcare professionals will likely have a rapid impact on substantial delay in diagnosis. We are hosting the conference immediately following the annual American College of Rheumatology meeting to take advantage of the fact that a number of our participants will already be in Washington, and to allow for easy participation from local area scientists and trainees. Despite this, we will be assembling many of our participants from across the US and the world and thus are seeking support for travel and accommodation costs. Primary outcomes from the meeting will involve the establishment of a patient-led collaborative research network and a number of specific deliverables including a set of shared patient-focused research priorities, short and long-term research goals, and essential patient input on defining outcome measure for future clinical trials.
CRMO is a commonly misdiagnosed, extremely rare bone disease primarily affecting children, where the immune system attacks normal bone, causing debilitating bone pain. There are very few researchers studying the disease so no specific diagnostic/disease-monitoring tools or FDA-approved treatments exist. Our conference will be the first of its kind bringing patients and researchers together to more efficiently drive productive research projects, increase awareness of the disease and begin to accelerate the development of new clinical tools resulting in a substantial impact on CRMO patient care.
