Showing 7 ideas for tag "registry"

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 »

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

Details on the impact of addressing this CQ or CC

Sleep and circadian disorders are extremely common. For many of these we know little about the natural history, whether different subgroups exist and effects of current therapies. Thus, developing specific registries for common sleep and circadian disorders would provide a basis for addressing these questions.

For some aspects, e.g., studies of inadequate sleep, impact of snoring and circadian disruption, would be facilitated by developing a specific sleep/circadian cohort with in-depth phenotyping. This strategy has worked extremely well in other areas, e.g., cardiovascular disease. The lack of this type of cohort for sleep and circadian disorders is a barrier to progress in this area. The high prevalence of these disorders and their known public health significance argue that development of such a cohort would be a game changer and accelerate progress in this new area of medicine.

Such a cohort could address several compelling questions:

a. What is the natural history of short sleep across the lifespan?
b. What is the impact of snoring? Does it lead, as has been proposed, to vibration injury to carotid arteries with accelerated vessel wall damage?
c. Are there different subtypes of individuals with the different sleep and circadian disorders?
d. What is the natural history of shift-workers and what types of shifts lead to increased risk for cardiovascular disease?

Feasibility and challenges of addressing this CQ or CC

Problems with sleep and circadian rhythm and the relevant disorders are common. There are multiple accredited sleep centers for clinical purposes in the United Sates. They use common phenotyping platforms that could be the basis of some aspects of addressing this critical challenge. Moreover, most CTSA programs have a sleep study component. There are patient support groups for sleep apnea, insomnia, restless legs syndrome and narcolepsy. Thus, these groups could be marshaled to help in this effort. There is already a Sleep Research Network that was founded by the field itself. It is currently based on volunteer effort and there are no resources to support it. It could be the basis for future activities in this area.

Name of idea submitter and other team members who worked on this idea Sleep Research Society

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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.

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

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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 »

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 envisioned impact of an integrated Care Center Network and Patient Registry is to create a resource that:

• Informs the understanding of interstitial lung disease (ILD), its epidemiology and natural history;
• Assists to understand treatment patterns associated with optimal outcomes that will inform an emerging standard of care and development of treatment guidelines;
• Facilitates patient and clinician engagement in support of future prospective studies;
• Furthers study of biomarkers and predictors of disease and severity;
• Documents patient experience of living with ILD as described through patient reported outcomes (PRO) including quality of life, functioning, and symptoms;
• Generates new hypotheses and new endpoints in support of future studies;
• Increases awareness of relevant issues and needs among the immediate ILD community;
• Provides the opportunity to promote and inform policies in the larger health care community in support of those with ILD

Feasibility and challenges of addressing this CQ or CC

With the establishment of collaborations between several partners, we initiated the PFF Care Center Network and Patient Registry in 2014. The Care Center Network and Patient Registry has since expanded to 21 centers regionally dispersed throughout the United States. The challenges of effectively and efficiently investigating the cause, care and treatment of pulmonary fibrosis are predominantly those of organization and integration of effort. Expertise is present throughout the United States. We suggest that with the continued expansion of the Care Center Network and Patient Registry, those challenges will be overcome and the focus of the fibrosis community efforts can be on diligently investigating the diseases that devastatingly affect patients. An integrated repository of well-phenotyped patients and biologic specimens is the first step in Precision Medicine for patients with interstitial lung disease and pulmonary fibrosis.

Name of idea submitter and other team members who worked on this idea Gregory P. Cosgrove, MD, The Pulmonary Fibrosis Foundation

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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 »

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

Feasibility and challenges of addressing this CQ or CC

Can be modeled on the ARDS/PETAL Network, but more broadly implemented for epidemiology and pragmatic studies.

Name of idea submitter and other team members who worked on this idea Society of Critical Care Medicine Executive Committee/Council

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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.

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

Details on the impact of addressing this CQ or CC

This Registry for AF patients would help identify new patient phenotypes, provide detailed information about the progression of disease and its consequences, and benefits of existing treatment options. The Registry could also be used to conduct other studies and trials.

Feasibility and challenges of addressing this CQ or CC

Large numbers of patients are faced with atrial fibrillation and this is recognized as an area of high priority investigation. In addition, expertise exists for developing and maintaining a registry.
Post-operative atrial fibrillation (AF) is the most common complication after cardiac surgery with incidence in the range of 20-50%. The consequences include increased morbidity, mortality, increased hospital length of stay and an annual cost of nearly $1 billion in the United States. It is well known that there are many different mechanisms underlying AF and that these differ from patient to patient.

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

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-12 net votes
7 up votes
19 down votes
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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).

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

Details on the impact of addressing this CQ or CC

develop registry provide contemporary data of local, regional and nation wide EMS practices in managing OHCA to address and develop successful resuscitation strategies across gender, age and race categories.

Feasibility and challenges of addressing this CQ or CC

combining ROC (Resuscitation Outcomes Consortium) and CARES (Cardiac Arrest Registry to Enhance Survival), the two largest North American existing OHCA registries have different (regional) foot print, quality control measures and thus goals. CARES was developed as U.S. based surveillance registry across majority of states and not a research database; therefore, collected only the minimum number of data elements that are known to be essential in the response and treatment of OHCA. ROC is a North American registry conducted at 10 major regions with a detailed and high quality CPR process data providing not only the OHCA rates but also detailed CPR characteristics. Combining a large geographic foot print with sites with established quality controls would offer insight into rural, suburban and urban OHCA resuscitation dynamics on which resuscitation strategies would be based.
It is well recognized that there are marked variations in survival from OHCA and IHCA among centers as well temporal trends, however, factors associated with it are incompletely understood. Ongoing quality data are needed to advance our understanding of resuscitation care, as well as variations in EMS/ED practices.

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

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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 »

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

Details on the impact of addressing this CQ or CC

See attached file

Feasibility and challenges of addressing this CQ or CC

Critical Challenge

Name of idea submitter and other team members who worked on this idea ASH Officers, Committee Members

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4 up votes
7 down votes
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