(@gcosgrove)

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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2 net votes
2 up votes
0 down votes
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(@nhlbiforumadministrator)

Goal 3: Advance Translational Research

Translational Bioinformatics Spanning Multiple Scales of Biologic Complexity to Implement Precision Pulmonary Medicine at the Po

What translational bioinformatics tools could be used in pulmonary medicine to allow multidimensional, multi-scale modeling of clinical and biomolecular data to assist clinical decision-making?

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-2 net votes
10 up votes
12 down votes
Active
(@gacdk0)

Goal 3: Advance Translational Research

Definitive Evidence of the Effectiveness of Pulmonary Rehabilitation

What is the clinical effectiveness of pulmonary rehabilitation in reducing hospital admissions and readmissions, improving health outcomes such as exercise tolerance and dyspnea, and positively impacting patient centered outcomes. Does this effectiveness vary based on the types of settings rehab is conducted in, urban vs rural environments, the components to the program, the timing of the program and the overall support... more »

Voting

9 net votes
12 up votes
3 down votes
Active
(@swigrisj)

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.

Voting

1 net vote
6 up votes
5 down votes
Active
(@ghunninghake)

Goal 2: Reduce Human Disease

Identifying Early Stages of Pulmonary Fibrosis

The majority of translational research designed to improve the lives of patients with pulmonary fibrosis has focused on studies of patients with advanced fibrotic lung disease. In contrast, little effort has been paid to understanding the natural history of pulmonary fibrosis, exploring the mechanisms/pathogenesis of the development of pulmonary fibrosis, and considering work designed to prevent the development of lung... more »

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29 net votes
35 up votes
6 down votes
Active
(@daniel.perez)

Goal 3: Advance Translational Research

Develop guidelines, standard of care, new technologies for respiratory care for adult facioscapulohumeral muscular dystrophy

There is a need for NHLBI to develop guidelines, standard of care, new technologies for respiratory care for adult muscular dystrophy (facioscapulohumeral, myotonic and limb girdle) patients with undiagnosed or unforeseen hypercarbia CO2 retention in the acute setting who end up in trouble to help the families, doctors and patients navigate their way back to stable condition e.g. perhaps going forward with non-invasive... more »

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-12 net votes
2 up votes
14 down votes
Active
(@daniel.perez)

Goal 3: Advance Translational Research

Does non-invasive ventilation (Bi-Pap) improve quality of life and muscle health in FSHD patients

What is the difference in quality of life and functioning in adult facioscapulohumeral muscular dystrophy patients who are on non-invasive ventilation Bi-Pap versus age matched FSHD patients not on ventilation in a long term longitudinal study?

Voting

-9 net votes
8 up votes
17 down votes
Active
(@katherinek)

Goal 2: Reduce Human Disease

How can we non-invasively, but still accurately, measure blood pressure in the pulmonary arteries?

Pulmonary hypertension (PH) is a complex, progressive condition characterized by high blood pressure in the lungs. The gold standard for measuring pressures in the pulmonary arteries is a right heart catheterization, where a special catheter is guided through the right side of the heart and into the pulmonary artery, the main vessel carrying blood to the lungs. This measurement is essential, as it allows physicians and... more »

Voting

67 net votes
75 up votes
8 down votes
Active
(@jakris)

Goal 3: Advance Translational Research

What is the comparative effectiveness of short-term vs. chronic (e.g., 12 mo) pulmonary rehabilitation?

What is the comparative effectiveness of short-term vs. chronic (e.g. 12 mos) pulmonary rehabilitation on survival, patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations), healthcare utilization, and costs from a societal and healthcare system perspective?

Voting

26 net votes
32 up votes
6 down votes
Active
(@dappell)

Goal 2: Reduce Human Disease

Does the genetic cause of pulmonary fibrosis have implications for treatment response?

Is pulmonary fibrosis due to genetic/heritable causes different than 'sporadic' 'idiopathic' pulmonary fibrosis? With findings in genetics and the emphasis on precision medicine the issue of pulmonary fibrosis being idiopathic will diminish with time. Treatment for this fatal disease should be accessible to those who have pulmonary fibrosis with no other alternatives.

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1 net vote
2 up votes
1 down votes
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(@amtager)

Goal 2: Reduce Human Disease

Fibrosis Across Organs: Bringing Together Investigators of Fibrosis of the Heart, Lungs and Bone Marrow

Fibrosis can affect essentially any tissue or organ, including the heart, lungs and bone marrow. Effective anti-fibrotic therapy has long been elusive, and transplantation has been the only therapy capable of restoring patient function as fibrotic diseases progress to organ failure. Although these diseases present clinically with organ-specific manifestations, they are now thought to share many common pathogenetic mechanisms.... more »

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16 net votes
20 up votes
4 down votes
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