Showing 7 ideas for tag "registry"
(@jnoel0) kudos icon +

Goal 3: Advance Translational Research

NEW INFRASTRUCTURE FOR CLINICAL RESEARCH IN SLEEP AND CIRCADIAN DISORDERS

Much of the current clinical research on sleep and circadian research depends on cohorts designed for other purposes. While this has been helpful, such studies have limitations. These limitations are related to availability of in-depth phenotyping data and questions as to whether individuals identified in population studies are equivalent to those who present clinically with specific disorders. These concerns could... more »

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186 up votes
60 down votes
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(@swigrisj) kudos icon +

Goal 2: Reduce Human Disease

Challenge

Genetic or biologic makers that predict outcomes in pulmonary fibrosis are needed.

Validated animal models of lung fibrosis that better resemble the human condition are needed to speed up the drug development process.

An international patient registry is needed to help promote understanding of the natural history of pulmonary fibrosis and real-world impacts of interventions.

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6 up votes
5 down votes
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(@gcosgrove) kudos icon +

Goal 2: Reduce Human Disease

Fibrosis Care Center Network and Patient Registry

Complex diseases such as interstitial lung disease and pulmonary fibrosis requires a collaborative effort to effectively characterize, appropriately diagnose, and efficient evaluate novel therapies. Similarly, basic, translational and clinical research in this field requires the integration of clinical phenotypes with biologic specimens. We propose the expanded development of the Care Center Network and Patient Registry... more »

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(@greg.martin) kudos icon +

Goal 2: Reduce Human Disease

National ARDS Registry

ARDS remains one of the most common and lethal forms of respiratory failure in critically ill patients. Improvements in understanding the pathogenesis has not led to effective treatments, and heterogeneity of the condition precludes major advances. A national registry would serve to improve understanding of epidemiology, disease characterization (for definitions) and can identify incidence, outcome, disparities, treatment... more »

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2 up votes
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(@nhlbiforumadministrator) kudos icon +

Goal 2: Reduce Human Disease

Registry of new-onset, post-operative atrial fibrillation

There is a need for an observational registry of new-onset post-operative atrial fibrillation (AF) patients to better understand the mechanisms of post-operative AF and allow clinicians to define patient-specific AF phenotypes and treatments. The registry’s information and infrastructure could be used to develop and conduct clinical trials that provide strong evidence for guidelines in treating this common problem.

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7 up votes
19 down votes
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(@nhlbiforumadministrator1) kudos icon +

Goal 2: Reduce Human Disease

National cardiac arrest registry

Cardiac arrest registries are needed to measure and improve the process and outcome of resuscitation care and provide a platform for exploring insight into risk factors, prognosis, and the effectiveness of interventions for out-of-hospital (OHCA) and in-hospital cardiac arrest (IHCA).

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17 down votes
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(@tsansone) kudos icon +

Goal 2: Reduce Human Disease

Critical Challenge

• One of the most important public health issues the Nation faces is the rising incidence of heart failure. HF incidence rates have risen faster than predicted. The prevalence will increase as better and more therapy becomes available. While heart failure is the biggest ticket item in the Medicare budget, the cost to society will increase more than it has already. But much HF can be prevented or onset prolonged. Investing... more »

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4 up votes
7 down votes
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