AoU Research Priorities Use Cases

What are the risk factors (genetic, environmental, other biological) for developing epilepsy later in life?

Initial data (e.g., demographic) and data that are noted routinely as a part of healthcare maintenance (e.g., anthropomorphic factors, blood pressure, cholesterol, serum creatinine, etc.) could be collected longitudinally and then evaluated in terms of onset of epilepsy later in life. Justification: as the US population ages, the incidence and prevalence of epilepsy is expected to increase, given the association of epilepsy... more »

Voting

12 votes
Ideate
(@jaime.hart)

AoU Research Priorities Use Cases

How do exposures to multiple environmental stressors impact chronic disease risk

The goal would be to examine the associations between multiple environmental stressors (air pollutants, temperature, etc) on chronic disease risk, and how these associations are modified by inherent characteristics, lifestyle factors, and the built and natural environments. This would require current & historical residential/work addresses and appending environmental data. This would provide more information on how these... more »

Voting

27 votes
Ideate
(@mary.salvatore)

AoU Research Priorities Use Cases

What is the natural progression of Idiopathic Pulmonary Fibrosis on Chest CT?

IPF patients become aware of disease when becoming symptomatic with cough and dyspnea. By then, CT often shows advanced fibrosis. It is important to know how long the patient had changes on CT before becoming symptomatic and finding clues to predict progression versus stability - for ex. the size of the pulmonary artery. This becomes more important now that the FDA has approved 2 medications which slow the progression... more »

Voting

5 votes
Ideate
(@lhwostow001)

AoU Research Priorities Use Cases

Conduct research to determine if blood can help identify the presence of the HPV-16 virus.

Goal: save millions of lives. A person dies from oral cancer every hour of every day. Methodology: - Include people diagnosed with oral and oropharyngeal cancer caused by the HPV-16 virus - Collect and analyze blood every 3 months within the first 2 years of diagnosis. Between 2 and 5 years do it every 4 months Outcome: increase the survival rate. The death rate is about 43% at five years from diagnosis. When found at... more »

Voting

3 votes
Ideate
(@margit)

AoU Research Priorities Use Cases

Interaction between diet, sleep, alcohol use, stress genetics and depression risk

Cardiovascular disease and depression are associated, but direction is unclear - or both (heart attack is a stressor triggering depression, depression leads to less exercise and increases CVD). Sleep disturbance is associated with alcohol and depression - cause and effect unclear. Alcohol can increase depression risk, and vice versa. Increasing omega-3 vs. omega-6 may be preventive for both depression and CVD. AOU is... more »

Voting

41 votes
Ideate
(@crystal.brown17)

AoU Research Priorities Use Cases

Could Schizophrenia Patients be Getting the Wrong Treatment?

I would conduct a month long study where I would observe schizophrenia patients from various age groups. I would monitor their interactions with their family, friends, and even while they are alone. For two weeks I will let the patients take their medication and the following two weeks I will monitor them without any medication.

Voting

9 votes
Ideate
(@deya2018)

AoU Research Priorities Use Cases

Conduct research to identify how many researchers are utilizing participatory action research (PAR) in their methods.

Create a study with PAR/public participation. Identify states/cities where a high concentration of research is being conducted or areas targeted in response to natural disasters: Florida, Texas, Puerto Rico, California. Seek out community-based organizations to learn how studies, and research have impacted communities in the past. Learn and listen to community members to understand how to conduct future research to minimize... more »

Voting

4 votes
Ideate
(@sjogrens.syndrome.foundation)

AoU Research Priorities Use Cases

Biomarker identification to help improve diagnosis, identify risk factors, and better classify patients with autoimmune diseases

For many autoimmune diseases, such as Sjögren's, a lack of clinical, hematological and histological biomarkers has proven to be a hindrance to our understanding, management, and treatment of the disease. This study would focus on identifying such biomarkers in patients with autoimmune diseases to help improve diagnosis, better classify patients, and identify risk factors, and have the potential to show improvement with... more »

Voting

32 votes
Ideate
(@sjogrens.syndrome.foundation)

AoU Research Priorities Use Cases

How can we translate knowledge about the microbiome into better ways to diagnose and treat autoimmune diseases?

The scientific and medical communities are rapidly learning more about the human microbiome and the role it plays in our health, but there are still many gaps that need to be addressed. The purpose of this study would be to focus on identifying the relationship between the microbiome and a systemic disease state, helping to inform new methods for translating knowledge about the micriobiome into better, more efficient... more »

Voting

40 votes
Ideate
(@sjogrens.syndrome.foundation)

AoU Research Priorities Use Cases

What are the pathogenic mechanisms leading to the development of blood cancers in autoimmune disease patients?

Patients with autoimmune diseases have been found to be at a higher risk of certain types of cancers, particularly hematologic cancers. A recent study found that patients with Sjögren's were eleven times more likely to develop a hematologic cancer compared to patients without Sjögren's. The purpose of this study is to identify the pathogenic mechanisms leading to the development of blood and other cancers in patients... more »

Voting

22 votes
Ideate

AoU Research Priorities Use Cases

Is a history of localized provoked or generalized vulvodynia associated with lower urinary tract symptoms (LUTS)?

8% of women may experience stigmatizing and debilitating chronic vulvar pain (vulvodynia) by age 40. Recurrent urogenital infections are associated with vulvodynia and women with vulvodynia may be at risk of LUTS. Vulvodynia patients fail to seek care and therefore we propose to ask women to report any period of pain during intercourse, tampon use, or at the time of a pelvic examination that lasted for at least 3 months... more »

Voting

199 votes
Ideate
(@sjogrens.syndrome.foundation)

AoU Research Priorities Use Cases

Can we identify the reasons for overlapping disease manifestations across high-burden illnesses?

This study would focus on identifying the reasons why a range of high-burden diseases, including Sjögren's, fibromyalgia, chronic fatigue syndrome and more, share overlapping disease characteristics. A better understanding of why this is would be greatly beneficial to a large group of patients with high-burden, costly illnesses, which often result in a decrease in quality of life and have negative economic implications.... more »

Voting

28 votes
Ideate
(@sjogrens.syndrome.foundation)

AoU Research Priorities Use Cases

Can we identify and/or develop better diagnostic tools for Sjögren's and other autoimmune diseases?

For Sjögren's, and other autoimmune diseases, a lack of reliable diagnostic tools makes an accurate and timely diagnosis difficult. This, of course, is detrimental to the patient and delays the appropriate care being received. This study would focus on the identification and development of better diagnostic tools for autoimmune diseases, such as Sjögren's, which could then result in more timely and accurate diagnoses... more »

Voting

27 votes
Ideate
(@sjogrens.syndrome.foundation)

AoU Research Priorities Use Cases

How can we better understand fatigue, depression, and cognitive dysfunction in Sjögren's and other autoimmune diseases?

Autoimmune diseases, such as Sjögren's, manifest themselves in a wide variety of ways in patients. However, a common thread in many of these diseases is fatigue, depression, and cognitive dysfuction, or "brain fog." These physical and mental manifestations can have serious, debilitating, consequences for those who suffer with them. A better understanding of the pathways of these manifestations will allow for a more informed... more »

Voting

33 votes
Ideate