Goal 3: Advance Translational Research

Vascular disease awareness

Increase awareness of vascular disease in the population. Public recognition and understanding is poor, despite high prevalence. ­ Improve public education about vascular diseases, the risk factors, early signs, and treatment.

Submitted by (@societyforvascularsurgery)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Name of idea submitter and other team members who worked on this idea : Society for Vascular Surgery

Voting

1 net vote
2 up votes
1 down votes
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Goal 4: Develop Workforce and Resources

Which factors are associated with systems performance?

What are the institutional factors, including structure and culture of care, that characterize systems performance? Which of these factors are potentially modifiable and/or scalable?

Submitted by (@rebecca.lehotzky)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Name of idea submitter and other team members who worked on this idea : AHA Staff & Volunteers

Voting

-3 net votes
2 up votes
5 down votes
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Goal 2: Reduce Human Disease

Enhanced Pain Research in Sickle Cell Disease

There is a need for more enhanced pain research in order to help improve sickle cell disease patient outcomes and quality of life.

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

Pain is the most common clinical manifestation of sickle cell disease (SCD) and accounts for a large proportion of emergency department visits and hospitalizations. Due to its impact on the patients’ quality of life, there is a need for more basic and clinical research studies focused on understanding the mechanisms of different pain syndromes as well as the role of neurotransmitters and inflammation in acute and chronic SCD pain. Also, comparative effectiveness studies in the management of chronic pain will be crucial in helping to improve the patients’ overall quality of life.

Name of idea submitter and other team members who worked on this idea : Alice Kuaban on behalf of the American Society of Hematology (ASH)

Voting

39 net votes
58 up votes
19 down votes
Active

Goal 2: Reduce Human Disease

Does epinephrine improve outcomes in OHCA

Epinephrine is the primary drug that is used in resuscitation but observational studies and a few small RCT suggest that it improves short term but not long term outcomes. Factors such as timing, dose, quality fo CPR and post-resuscitation care all confound the issue. Large RCTs conducted at multiple centers are desperately needed to address this question.

Submitted by (@dayam0)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

If short terms outcomes are improved but not long term outcomes, we are only adding costs and not improving population health

Feasibility and challenges of addressing this CQ or CC :

Will require a large prehospital clinical trials network and ideally also a current national registry of OHCA to address secular changes in other confounding variables

Name of idea submitter and other team members who worked on this idea : Mohamud Daya

Voting

1 net vote
3 up votes
2 down votes
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Goal 2: Reduce Human Disease

What is the effect of variant genes on AVM development in HHT

Natural genetic variation between individuals can influence the outcome of carrying an HHT mutation. Some gene variants may be protective while others may increase the risk of AVM or telangiectasis. By identifying the variant genes that alter risk of AVM may give clues to the molecular mechanisms of AVM formation and provide new drug targets

Submitted by (@mariannes.clancy)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Name of idea submitter and other team members who worked on this idea : Marianne Clancy MPA

Voting

1 net vote
1 up votes
0 down votes
Active

Goal 3: Advance Translational Research

Palliative and hospice care for COPD patients

Does palliative care and/or hospice care as practiced across communities improve end-of-life care for COPD – specifically, does it reduce the burden of symptoms, improve HRQoL and satisfaction, reduce utilization in last 6 months of life (i.e. hospital visits, cost, invasive ventilation use, etc), improve the end-of-life experience, and increase the concordance of place of death to expressed patient preferences?

Submitted by (@k.willard)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Voting

12 net votes
16 up votes
4 down votes
Active

Goal 1: Promote Human Health

Developing tools/algorithms for objective evaluation of sleep health

What are the best tools/algorithms for robust and objective evaluations of sleep health biomarkers?

Submitted by (@nhlbiforumadministrator)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

Sleep deficiency is pervasive in today’s society and associated with an array of threats to health and public safety. The availability of a biomarker(s) for sleep health would turn-the-curve on developing practical and feasible ways to identify individuals at risk for sleep deficiency and prevent/manage associated risks to health and public safety on a large-scale.

Feasibility and challenges of addressing this CQ or CC :

Sleep and circadian regulation is coupled to an array of behavioral, physiological and molecular/genetic processes to leverage in the development of biomarkers for sleep health.

Untreated sleep disorders and sleep deficiency pose a significant burden on health and public safety. There is currently no biomarker, or point-of-care technology available to objectively measure an individual’s level of sleep deficiency or susceptibility, a significant barrier to prevention and management.

Name of idea submitter and other team members who worked on this idea : NHLBI Staff

Voting

124 net votes
162 up votes
38 down votes
Active

Goal 3: Advance Translational Research

Improving patient-clinician communication and decision-making for patients wiith serious heart, lung or blood diseases

How can we ensure that patients with serious heart, lung, or blood diseases fully understand their prognosis, treatment options, and the risks and benefits of those options and help them make decisions that fully incorporate their own personal values, goals, and treatment preferneces?

Submitted by (@jrc000)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

Patients with serious heart, lung and blood diseases are often faced with dificult treatment decisions that involve tradeoffs and long-term consequences without adequate understanding of their prognosis and the risks and benefits of treatment. There is emerging consensus that a shared decision-making approach provides the best support for patients and their families in this situcation, but there is evidence that this is not happening and there is inadequate data to guide the best approach to ensuring it does happen. Dramatic advances in treatment technologies make treatment choices ever more complex and often make the tradeoffs more difficult to fully understand. Advances in our ability to help patients and their families through this decision-making process have not kept up with these advances in treatment options.

Feasibility and challenges of addressing this CQ or CC :

Incorporation of palliative care approaches, decision aides, and improvements in clinician-patient communication provide the opportunity to make important advances in this area, but have not been fully developed or incorporated. There is an opportunity to advance the communication, decision-making, and implementation science to have a dramatic impact on enhancing healthcare and quality of life for patients and thier families.

Name of idea submitter and other team members who worked on this idea : J. Randall Curtis, MD, MPH

Voting

27 net votes
33 up votes
6 down votes
Active

Goal 2: Reduce Human Disease

Improving patient-centered outcome assessments in HLBS studies

What types of newer patient-centered quality of life assessment tools can be employed in heart, lung, blood and sleep studies so that they can be validated and refined to improve our measurement of quality of life outcomes in populations of interest to NHLBI?

Submitted by (@nhlbiforumadministrator)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

Improving our ability to precisely measure heart, lung, blood, and sleep patients' quality of life can enable evaluation of a treatment's impact on patient-centered outcomes such as overall quality of life and its components -- pain, symptoms, and a patients' social, psychological, and physical functioning.

Feasibility and challenges of addressing this CQ or CC :

New tools have been developed, notably through the PROMIS common fund project, that allow potentially more precise, reliable, valid and sensitive measurement of Q of L outcomes, with less patient burden. These tools are available but require validation in HLBS populations to allow widespread adoption and routine use in NHLBI-supported clinical trials and population studies.

Advances in biomedical science mean we are living longer with chronic diseases, and the goal of treatment increasingly focuses on disease management, maximizing function, and improving quality of life, not just lengthening life. In addition, patient-centered approaches to health care encourage a view of patients as “whole persons” with emphasis on function and capturing the "patient's voice," not just mortality/morbidity outcomes. Functional and quality of life outcomes, e.g., assessment of pain, symptoms, emotional distress, physical & social functioning, are critically important outcomes to many HLBS patients, but their measurement requires self-reports of patient experiences and thus pose challenges to precise, valid and reliable assessment.

 

Assessment tools using computerized adaptive testing (CAT), such as those developed in the Patient-Reported Outcomes Measurement Information System (PROMIS) project, have been shown to be precise, valid, sensitive to change and easier to administer than traditional Q of L measures in a limited number of studies, but they require validation in HLBS patient populations before they can be used more widely in NHLBI-funded studies.

Name of idea submitter and other team members who worked on this idea : NHLBI Staff

Voting

11 net votes
20 up votes
9 down votes
Active

Goal 2: Reduce Human Disease

Prodromal symptoms and signs of a heart attack/acute coronary syndrome

Can early warning symptoms and signs of a heart attack (acute coronary syndrome) be quantified through standardized symptom surveys, biochemical measures, electrocardiographic, or other diagnostic means to enable earlier evaluation and treatment?

Submitted by (@mmhand)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

If patients could detect symptoms that have been demonstrated prospectively to herald an impending heart attack and/or if there were sensitive biochemical, electrocardiographic, or other tests that could be performed by patients/bystanders (e.g., in the home setting), by emergency medical services personnel, primary care providers or others in community settings to assist with decision support about seeking intervention for early symptoms/signs of an acute coronary syndrome, this would potentially save thousands of lives from heart attacks and sudden cardiac death.

Feasibility and challenges of addressing this CQ or CC :

Prodromal heart attack symptoms (waxing and waning of symptoms in advance of complete vessel occlusion) have not been prospectively described or quantified. The standard symptom constellations from epidemiologic surveys have been described for heart attack symptoms (ACS) though there is variability in symptom data collection among heart attack surveys as well. Also while there are biochemical tests for muscle damage (troponin), there is not a biochemical test for ischemia such as could be applied in the home or work setting. Similarly it would be helpful if a self-applied electrocardiogram by patients/bystanders could give a diagnosis of early ischemia (prior to occlusion) so patients could seek observational care.

Name of idea submitter and other team members who worked on this idea : Mary Hand

Voting

-2 net votes
1 up votes
3 down votes
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Goal 3: Advance Translational Research

Animal models of vascular diseases

How can we better model human vascular disease in all its complexity?

­This is key to more effective translation of both diagnostics and therapeutics. Develop improved animal models of vascular diseases including PAD, aneurysm, venous diseases, to facilitate fundamental research and preclinical development.

Submitted by (@societyforvascularsurgery)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Name of idea submitter and other team members who worked on this idea : Society for Vascular Surgery

Voting

2 net votes
3 up votes
1 down votes
Active

Goal 4: Develop Workforce and Resources

Making R01 funding work for the Medical Sciences

We need to spread R01 funding around more to ensure that the best science has funding adequate to move forward. To do this I believe changing how we think about R01 funding and expenditures can be used to put the NIH funds to better use. Too often successful researchers have the majority of their salaries on R01s and the institutions have little skin in the game. PI salaries can be a large part of the escalating budget ...more »

Submitted by (@wjones7)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

The impact of spreading the funding would be to improve funding rates, improve funding of new investigators, and supporting more diverse science. Negative impacts would include reduced funding some large labs. In my experience, in some cases, this would be a good thing. There could be special programs and exceptions for large labs that make significant important contributions and serve as resources to reduce negative impact. Review of grants should include information on manuscript retractions and large labs with many retractions should be carefully scrutinized for defunding.

Feasibility and challenges of addressing this CQ or CC :

Such changes would have to be made incrementally over time since this will require states and institutions to pick up some of the cost of science and therefore must be phased in to allow for time to adjust the workforce in specific places to align with budgetary constraints. Institutions might be encouraged to do more fundraising to actually support science to fill gaps.

Name of idea submitter and other team members who worked on this idea : Keith Jones with major input from Pieter de Tombe

Voting

28 net votes
44 up votes
16 down votes
Active