One for All of Us
By Maggie Matern, GPILS EPI/HGEN graduate student
Dr. James Battey, director of the National Institute on Deafness and Other Communication Disorders (NIDCD), blasted an email out to NIDCD grant recipients on Thursday morning regarding the NIH’s All of Us Research Program. This email was exciting, and honestly a little coincidental, since I had already planned to write this article for the Grad Gazette to beg for student involvement. For those who don’t know, the All of Us program, a product of the Obama administration’s Precision Medicine Initiative, aims to understand how an individual’s genes, occupation, and environment impact their health. Starting this spring, the NIH plans to enroll over 1 million Americans from diverse ethnic backgrounds for a 20-year longitudinal study on health and health outcomes. The resulting data collected will then be de-identified and freely available to the public for research purposes. This is a historic undertaking and is sure to help scientists uncover unknown gene-environment interactions in both rare and common disease states.
The reason I’m writing this article though, and why Dr. Battey sent that email, is because the NIH is looking for suggestions on what data to measure and collect from this population. In January, the All of Us program launched what could be called an online suggestions box, allowing the general public to create an account and submit their own ideas on what data to collect, and for which diseases this data can be useful to study. In a nod to modern sharing sites like Reddit and Imgur, users can also upvote and comment on their favorite research ideas. Users have already submitted over 200 of these “Use Cases” that you can easily view at https://allofusresearchpriorities.ideascale.com. For example, the user Jane Atkinson asks the question, “what genes are associated with temporomandibular joint dysfunction (TMD) and its co-morbid pain conditions?“ and Bruce Carver suggests, “investigate the role of environmental and dietary factors in the incidence of chronic pain.” This suggestion box will be open until February 23, after which the suggestions will be compiled and discussed at their Research Priorities Workshop in March. Submit your question here: https://www.allofus.nih.gov/news-events-and-media/announcements/all-us-research-program-seeks-input-research-priorities.
With this historic project, the NIH is proposing to generate a huge amount of data, and you (yes you, sitting bleary eyed and under-caffeinated at your desk) can utilize this data to answer the questions that you’re excited about. In an attempt to persuade you to participate, I started submitting my own ideas to the All of Us website. I created an account (@maggiematern), clicked “submit new idea,” and wrote up a use case. Here it is below:
My research question (max characters = 128): “What genetic and environmental factors influence the progression of hearing loss in aging adults (presbycusis)?”
My research summary (max characters = 500): “The NIDCD estimates that age related hearing loss, or presbycusis, affects 1 in 3 individuals in the United States between 65 and 74 years old, and nearly half of those older than 75. Despite this large burden, few genetic risk factors have been identified, and it is unclear how genetics and environment interact to influence hearing loss susceptibility. I propose to measure hearing loss progression in the All of Us cohort, so that this topic can be studied and preventative treatments developed.”
You then have the option to add in up to 5 types of data that will be required to answer your study question. Mine were whole genome sequencing (performed once), environmental exposure surveys (taken once per year), and hearing loss progression measured by audiograms and speech-in-noise tests (also taken once per year).
Super simple, right? I’m also planning to submit research questions for other diseases that mean something to me personally, like Alzheimer’s disease and colon cancer. I really encourage everyone to get online and take the opportunity to make suggestions for the All of Us program before the February deadline. This could be your future research!