Showing 48 ideas for tag "sickle"

Goal 2: Reduce Human Disease

Alternative treatments in sickle cell disease

There is a growing desire for the development of alternative treatments and natural therapies for the treatment of sickle cell disease.

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

Details on the impact of addressing this CQ or CC

Studies have indicated higher levels of fetal hemoglobin, even moderate levels, as being capable of reducing pain episodes. Development of therapies other than hydroxyurea, may be beneficial to individuals with SCD, specifically natural compounds as opposed to chemical based drugs. Additionally, it may be beneficial to the SCD survivors and the medical community to come up with biomedical alternatives to opiates and heavy narcotics used to induce relief and quiet the discomfort of the patient, even at the risk of addiction, resulting from prolonged usage (a life time).

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

27 net votes
42 up votes
15 down votes
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Goal 2: Reduce Human Disease

Neurocognitive development and delays in sickle cell disease

Are neurocognitive developmental delays significantly present in children and adolescents living with sickle cell disease? What effect do these delays have on the overall morbidity associated with sickle cell disease?

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

Details on the impact of addressing this CQ or CC

Conversations among the sickle cell population are increasingly focusing on mental health, neuropsycology as it relates to mental health, and the need to develop community life skills and personal development.

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

30 net votes
41 up votes
11 down votes
Active

Goal 2: Reduce Human Disease

Hypoxia, acute chest syndrome and sickle cell disease

What markers in sickle cell disease can predict hypoxia after acute chest syndrome or pneumonia?

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

Details on the impact of addressing this CQ or CC

Understanding that sickle cell disease has a character of depriving oxygen, is there any predicators that can tell if a child will have hypoxia after experiencing acute chest syndrome or pneumonia.

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

32 net votes
41 up votes
9 down votes
Active

Goal 3: Advance Translational Research

psychosocial care in sickle cell disease

What are the most effective trans-disciplinary and multi-level strategies for accelerating psychosocial care with sickle cell disease and how psychosocial factors impact families?

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

Details on the impact of addressing this CQ or CC

Since sickle cell has multiple layers in medical treatment strategies, how can the same thought process happen when it comes to psychosocial matters? How can the NHLBI develop effective patient engagement trans-disciplinary and multi-level strategies that work with medical strategies to deal with psychosocial matters for individuals and families?

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc community members

Voting

38 net votes
46 up votes
8 down votes
Active

Goal 3: Advance Translational Research

Implementation science research to reduce adverse effects of SCD

From various publications and reports, we have characterized the risks associated with sickle cell disease (SCD) and understand many of the barriers for treatment of SCD in LMICs. How can implementation science research be used to reduce the negative outcomes of SCD in low/middle income countries?

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

Details on the impact of addressing this CQ or CC

• Reduction of deaths and negative outcomes associated with SCD and in LMICs
• Provide the evidence base that supports culturally relevant implementation strategies that reduce deaths associated with SCD in LIMCs

Feasibility and challenges of addressing this CQ or CC

• Yes
, this is feasible
• Common goals and deliverables between NHLBI and partners will need to be identified
• Partnerships can be with international organizations, Ministries of Health and other partners

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

Voting

18 net votes
31 up votes
13 down votes
Active

Goal 2: Reduce Human Disease

The treatment of asthma in patients with SCD prevents the development of ACS and VOS.

Does the aggressive treatment of asthma prevent the developement of acute chest syndrome (ACS) and vaso-occlusive syndrome (VOS) in patients with sickle cell disease (SCD)?

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

Details on the impact of addressing this CQ or CC

Improvement of health for persons with SCD.
Decreased hospitalizations and use of health resources.
Better understanding of the role of bronchospastic/inflammatory airway disease and hypoxemia as causes of acute chest syndrome and VOC.

Feasibility and challenges of addressing this CQ or CC

Feasible but stumbling block could be enrollment of patients since many patients with SCD are not seen by asthma specialists. Study could be a multicenter study with two hospitals in one major city and in one center, patients with SCD receive usual care and at another center they receive aggressive treatment and monitoring of their lung disease.

Name of idea submitter and other team members who worked on this idea Scott Schroeder

Voting

13 net votes
27 up votes
14 down votes
Active

Goal 2: Reduce Human Disease

Assess the true impact of sickle cell trait on cardiovascular health across then age spectrum

Sickle cell disease is now understood as a disease of inflammation in addition to abnormal red blood cells. It is likely persons with sickle cell trait are also negatively affected by the damage caused by inflammation. There is a significant racial disparity in hypertension, stroke, and chronic kidney disease. It remains unclear the degree to which sickle cell trait contributes to this disparity. It also remains unclear... more »

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

Details on the impact of addressing this CQ or CC

Recent evidence in the United States emphasizes the possible health risks for individuals with HbAS including increased incidence
of renal failure and malignancy, thromboembolic disorders, splenic infarction as a high altitude complication, and exercise-related sudden death. Additional concerns include the increase risk of hypertension from endothelial scaring and additional vascular abnormalities. Early preventative therapies for persons with HbAS (sickle cell trait) could reduce the progression of cardiovascular disease in manny individuals if found to be of concern.

Feasibility and challenges of addressing this CQ or CC
  1. Several identified impediments to research of sickle cell trait have included under-representation of the African– American community in preclinical and translational research projects and limited study in health disparities research (Am J Hematol . 2012 March ; 87(3): 340–346).
  2. Ethical considerations in screening athletes and other individuals seeking labor intensive occupations for sickle cell trait
  3. The diagnosis of the carrier state for a genetic disease may be associated with serious health problems that can lead to widespread bioethical and social stigmatization and additional concerns including the increased need for testing and counseling

Name of idea submitter and other team members who worked on this idea Julie Kanter

Voting

17 net votes
31 up votes
14 down votes
Active

Goal 4: Develop Workforce and Resources

Community education on phenotypic expressions of sickle cell disease

How effective are current community education techniques on the various phenotypic expressions of SCD?

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 parents knew what to expect with precision they could be proactive in care

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

17 net votes
27 up votes
10 down votes
Active

Goal 3: Advance Translational Research

Sickle cell disease and fatigue

What factors, other than hemoglobin count, are involved in the extreme fatigue experienced by individuals living with sickle cell disease?

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

Details on the impact of addressing this CQ or CC

Many in the sickle cell community report continuous fatigue that interrupts their daily activities in spite of normal, or above baseline, hemoglobin levels

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

17 net votes
29 up votes
12 down votes
Active

Goal 2: Reduce Human Disease

Single nucleotide polymorphisms, microarray and sickle cell disease

Do SNPs account for any of the variability seen in the phenotypic expression of sickle cell disease? Can microarray analysis be used to map these SNPs, promoting refined care plans for those living with sickle cell disease?

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

Details on the impact of addressing this CQ or CC

Multiple Single Nucleotide Polymorphisms (SNPs) have previously been identified in the mu opioid receptor and it is estimated that millions might exist throughout the genome. Drastic phenotypic variability exists among patients in the sickle cell community. Do SNPs account for any of this variability and can this information be used to more effectively treat sickle cell disease.

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

18 net votes
32 up votes
14 down votes
Active

Goal 2: Reduce Human Disease

Mental health and wellness in sickle cell disease

A growing concern among the sickle cell community surrounds the lack of mental health and wellness services. Many in the community deal with anxiety and depression. It is well known how intricately connected mental and physical health are. So if we know that stress can trigger a psychological crisis which in turn triggers a physical pain crisis, why do we not automatically include mental health services within patient... 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

Many in the SCD community feel like providers do not take a proactive approach to mental health. A comprehensive approach to developing mental health and wellness services and programs provides an opportunity to address factors contributing to morbidity, and perhaps mortality, in the SCD community, outside of the hospital walls.

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

25 net votes
38 up votes
13 down votes
Active

Goal 2: Reduce Human Disease

Evidence-based holistic care for sickle cell disease

What are the best, evidence-based models to facilitate holistic care across the lifespan for individuals living with sickle cell?

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

Details on the impact of addressing this CQ or CC

Unless an individual is a candidate for transplantation, sickle cell will be a lifelong challenge. Much effort has been focused in the pediatric area and on physical aspects of the disease. However, adult care and mental/psycho-social health have not been adequately addressed. A holistic approach across the lifespan would fill these gaps and perhaps lead to better health outcomes and addresses NHLBI's goal of reducing the burden of human disease.

Name of idea submitter and other team members who worked on this idea Sickle Cell Warriors, Inc. community members

Voting

26 net votes
40 up votes
14 down votes
Active

Goal 2: Reduce Human Disease

A Chidren's Oncology Group (COG) for sickle cell disease (SCD)?

We have all witnessed the success of the National Cancer Institute (NCI) funded Children's Oncology Group - an organization that has made tremendous advancements in the care of children with cancer, very rare compared to sickle cell disease. COG has been able to not only create a database of the numerous studies, but has the unique ability to make "smaller" institutions feel important as is evident by patient enrollment.... 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

- A database of all ongoing studies related to sickle cell disease that will be easily accessible by all pediatric hematologists
- A unified system of enrolling patients from academic centers for all the different studies, no matter how big or small
- Studies can be grouped depending on condition - renal disease, pulmonary hypertension etc.
- Should allow greater involvement/recruitment for patients into phase 1 studies

Name of idea submitter and other team members who worked on this idea Suvankar Majumdar MD

Voting

23 net votes
28 up votes
5 down votes
Active

Goal 2: Reduce Human Disease

Family centered interventions in sickle cell

Sickle cell is a genetic disease with lifelong health consequences for affected individuals and their families. Interventions for individuals with sickle cell must be patient and family-centered.

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 International Association of Sickle Cell Nurses and Physician Assistants, Inc.

Voting

18 net votes
20 up votes
2 down votes
Active

Goal 4: Develop Workforce and Resources

Sickle cell education for healthcare providers

Although sickle cell was first described more than 100 years ago and more than 100,000 individuals in the US are living with sickle cell disease, healthcare providers still lack basic knowledge of the key components in providing care for individuals with sickle cell. This often leads to poor health outcomes including stigmatization of patients with sickle cell seeking care. Evidenced-based curriculum should be available... more »

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 International Association of Sickle Cell Nurses and Physician Assistants, Inc.

Voting

18 net votes
21 up votes
3 down votes
Active