What Needs to Happen
This is a “physical indicator,” a crucial first step in the development of easily accessible diagnostic tools for use by pediatricians and clinicians worldwide. Without a biomarker, diagnosis remains clinical, based on presentation and history. This reduces the accuracy and speed of diagnosis and makes treatment more challenging, with devastating results for patients and their families. Innovations in testing would prompt the development and implementation of diagnostic guidelines.
Uniform Treatment Consensus
Currently, no consensus exists in the medical community on treatment for children with post-infectious neuroimmune disorders. Robust data collection is needed to elucidate the relationship between clinical presentation, timing and type of intervention, and outcome. Large-scale data analysis would bring consensus regarding treatment approaches for children with these conditions and transform clinical care into precision medicine, enabling an optimal match between patient and intervention.
Dissemination of Information and Research Findings
Clinicians world-wide need access to accurate information and up-to-date research to ensure a consensus clinical approach for patients, including differential diagnosis and best practice treatment guidelines. Building a mechanism for information-sharing and collaboration between scientists and doctors will ensure that scientific discoveries impact clinical practice and clinical experience informs research.
Center of Excellence
Widely regarded as one of the world’s top hospitals, Massachusetts General Hospital (MGH) is home to one of few research and treatment facilities in the country studying PANDAS and PANS, two post-infectious neuroimmune disorders. MGH will become a worldwide hub for the dissemination of research and best practices.
Located in Boston with access to some of the most innovative neuroscience laboratories, MMF will establish a novel data collection and bio-banking process, utilizing a partnership between scientists at MGH and MIT and an international team of researchers. The data and biological samples will serve as a basis for research into the exact mechanism for these conditions. Sydenham's Chorea, with known etiology and clear physical and psychiatric symptomatology, will serve as a model for these studies.
Strategically drawing from renowned scientific minds in our backyard, we will foster a network beginning with researchers from Harvard, MIT, Boston Children’s Hospital, and MGH, and extending across the country, to Stanford University, and beyond. This consortium will launch major research initiatives and facilitate collaboration between scientists and clinicians worldwide.