The PRAXIS Nexus The PRAXIS Nexus

National Institutes of Health Seeks Your Input for Research Priorities

Posted on February 09, 2018   |   
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Do you have a great research idea for Chronic Obstructive Pulmonary Disease (COPD)? The National Institutes of Health (NIH) wants to hear from you! COPD remains the country’s third leading chronic disease cause of death. Although COPD is a significant public health problem in the United States, awareness of COPD remains low at all levels and significant gaps in clinical care, research, and treatments still exist. To increase the Country’s investment in COPD research, we have to ensure that the patient, clinical and scientific communities come together to articulate the areas where research is most needed, what research holds the most immediate promise and the long-term vision for COPD research. The All of Us Research Program is a part of the National Institutes of Health’s Precision Medicine Initiative, a large, multi-year effort that will lead to advances in how we determine what treatments are right for each individual and how their unique genetic and environmental factors play a role in disease development and treatment. All of Us has a goal of gathering data from at least a million volunteers nationwide and now they are seeking ideas for important data elements and research questions the program might address using this data.

All of Us will be collecting ideas with the help of an online tool known as a “use case,” which describes a health problem or research question of interest. Once gathered, the ideas will be considered at a Research Priorities Workshop in March 2018 and will help the program identify how to better support research across a range of health topics.

It is critically important that we obtain broad input from the COPD community. Your ideas will help inform how to leverage the program in the best way possible and ultimately advance the research that could lead to life-changing improvements in COPD research. Without your input, COPD research questions may not end up on the list of priorities for All of Us and important respiratory related data elements may not be collected. Please consider taking the time to submit use cases and search for already submitted cases to provide votes and comments for.

Ready to Share Your Research Ideas?

Use the All of Us community website, Idea Scale to submit your research ideas and vote on ideas that have been submitted.

It’s easy! Simply go to the NIH’s All of Us website at https://allofusresearchpriorities.ideascale.com/ to join the All of Us research community by clicking in the upper right-hand corner of the page to register.

Step 2: Click the “Ideas” tab (located between “Welcome” and “FAQ” near the top of the screen). Click on the “Submit New Idea” tab and follow the instructions. If you don’t know the answers to some of the questions or fields below, that’s OK; just fill out as much as you can. And you are welcome to submit as many ideas as you’d like.

Add your research idea as a “use case,” which is a hypothetical study designed to answer an important research question. Use cases include questions about what information will be needed to conduct the research study, such as:

Add a research question that could be uniquely answered by the All of Us Research Program resource. (128 characters)

  • Provide a summary of how you would design a study to address this research question, such as goals, methods or expected outcomes. Or, if you prefer not to, then please enter N/A (500 characters)
  • What data are needed to answer the research question? (Optional for submission but for investigators making submissions, please also consider including the following basic set of respiratory related data elements in your submission by typing them into the text boxes below the drop-down menu if they do not appear): History, smoking (in the drop down menu); History of respiratory symptoms and diagnosis since childhood; Simple lung function testing; CT scans on subset; Analysis of CTs that are already being acquired for lung cancer screening for quantitative analysis for emphysema-lung structure; Occupational history
  • How could we collect the data? (Optional for submission but please consider selecting collection methods from the drop-down menu on the form-examples: claims data, EHR, death certificates, PROs etc.)
  • What are the specific requirements for data collection? (Optional-For example: Should a measurement be taken once a year, every month, continuously during waking hours, or at some other interval?)

How do I search for and vote for submitted research ideas?

  • From the “Ideas” page, you can filter ideas by “recent” or “popular”,
  • Search for idea submissions by category by typing key words into the “search ideas” box on the right side of the page.
  • Search for COPD or other issues that you care about.
  • Vote for the ideas you support by clicking the up arrow in the box that shows the vote total.

You may provide input through February 23, 2018. For more information, please visit Research Priorities. If you have any questions, please email the team at AoURPW@nih.gov.

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