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 Meeting In Bethesda Maryland Information 
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Uncovering the Hidden Burden of Genitourinary Conditions: A NIDDK Workshop
October 7, 2019 (8:30 AM – 5 PM) through October 8, 2019 (8 AM-3 PM)
Natcher Auditorium, NIH Campus, Bethesda, MD ... Conditions

Background: Genitourinary (GU) conditions—including urinary tract infection, urologic chronic pelvic pain syndrome, erectile dysfunction (ED), conditions associated with lower urinary tract symptoms (e.g., urinary incontinence, frequency, urgency, nocturia), and urinary stone disease—are common. In addition to the significant impact GU conditions have on patient quality of life, existing epidemiological data suggest that GU conditions may play a role in development of obesity, diabetes, depression and hypertension and may be early manifestations of systemic conditions (e.g., ED and cardiovascular disease; nocturia and chronic kidney disease) that are widely recognized as high priority public health conditions. Yet, GU conditions are rarely considered in context of overall health or recognized as potential factors on the causal pathway of research on these prioritized conditions. As a result, the true burden of GU conditions remains hidden. We lack the data to understand the total burden of these conditions in terms of patient and caregiver perspectives, combined prevalence, direct and indirect economic costs to patients, family, community infrastructure and the healthcare system; environmental impacts, and physical, mental and social health consequences across the life course.

The NIH—in collaboration with numerous federal agencies—will convene an interdisciplinary workshop of researchers and health professionals, including urologists and urogynecologists, other specialists (psychiatrists, geriatricians, nephrologists, etc.), primary care providers, educators, measurement and data scientists, economists, research scientists, policy experts, public health professionals, engineers and statisticians, among others. The workshop will build from existing federal efforts to measure the various GU conditions. The workshop will present and consider how existing measures from these efforts may be used to better understand the GU condition burden and will consider strategies for incorporating assessment of GU conditions into ongoing large cohort studies.

Workshop Objectives:

Determine what data are needed to understand the hidden burden of GU conditions across the life course and among different populations.

Determine what data are needed for GU conditions to be considered as high priority public health conditions by NIH and other research funders, Federal agencies, Congress, academic institutions and society as a whole.

Determine how necessary data may be captured in a feasible manner to build a complete picture of the burden of GU conditions.

Determine to what extent and for which conditions data can be gathered from electronic health records and other health IT systems, recognizing the low awareness of these conditions among patient and clinicians and their poor recognition and diagnosis in the clinical setting

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Sun Apr 14, 2019 4:28 pm
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