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7 Considering Challenges and Opportunities in a Shared Research Agenda
Pages 79-86

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From page 79...
... Collaboration is critical to addressing the breadth of these chronic conditions, which according to Nath are the "biggest mysteries in medicine." A key challenge in the biology of these infectionassociated chronic illnesses is the heterogeneity of symptoms, he added. Individual patients express different symptoms and pathophysiology, despite significant overlap between conditions and symptoms.
From page 80...
... Nath concluded with a list of potential priority areas for future progress: • Agreeing on a common term, such as infection-associated chronic illnesses, to serve as an umbrella for uniting research endeavors. • Prioritizing patient engagement at every step of the research process.
From page 81...
... Proal also supported performing similar forms of analysis on patients with different infectionassociated chronic illnesses to obtain comparable datasets, she said. Lastly, Proal called for conducting multiple analyses on the same well-characterized study participants to maximize valuable data collection.
From page 82...
... Financial support services that have been provided for HIV care or pediatric cancer could serve as a model for making treatment more accessible at clinics that specialize in chronic illnesses. Rowe noted the importance of studying clinical observations in addition to laboratory observations, as much has been learned about conditions such as Ehlers-Danlos syndrome by examining cascading symptoms expressed in patients.
From page 83...
... through NIH, which contain a clinical core and an administrative core that enable open communication, and noted the NIH requirement that data are uploaded into a central data integration platform. She encouraged NIH to continue to offer those types of grants for infection-associated chronic illnesses and added that many researchers are looking for more high-risk/high-reward, faster turnaround funding mechanisms to help them be more responsive to identified problems and needs.
From page 84...
... (Fallon) Potential Research, Treatment, and Diagnostic Approaches • Following patients longitudinally throughout studies.
From page 85...
... (Horn, Proal) • Engage industry through identifying potential pathways affected and defining endotypes and biomarkers of conditions.


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