Got a Great Research Idea? “All of Us” Wants to Hear It!
Posted on by Dr. Francis Collins
One of the boldest undertakings that NIH has ever attempted, the All of Us Research Program has been hard at work in a “beta” testing phase, and is now busy gearing up for full recruitment in the spring. This historic effort will enroll 1 million or more people in the United States to share information about their health, habits, and what it’s like where they live. This information will be part of a resource that scientists can use to accelerate research and improve health. How? By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward realizing the full potential of precision medicine.
Before embarking on this adventure, All of Us is reaching out to prospective researchers, community organizations, and citizen scientists—including people just like you—to get their input. Imagine that the project has already enrolled 1 million participants from all over the country and from diverse backgrounds. Imagine that they have all agreed to make available their electronic health records, to put on wearable sensors that can track body physiology and environmental exposures, and to provide blood samples for lab testing, including DNA analysis. Is there a particular research question that you think All of Us could help answer? Possible topics include risks of disease, factors that promote wellness, and research on human behavior, prevention, exercise, genetics, environmental health effects, health disparities, and more. To submit an idea, just go to this special All of Us web page.
All of Us is using a survey platform called IdeaScale to collect the ideas. To access it, you will need to register by clicking on the “register” link at the upper right corner of the web page. Registering doesn’t take long at all, and you will need to provide your name and email address. Once you’re registered, you can look over research questions submitted by others, comment on them, and join in to add your idea.
So, if you’ve got a few minutes, why not share your thoughts and help build the future of precision medicine? The deadline to submit ideas is February 23.
In March, all of these ideas will be discussed at a workshop hosted by the All of Us Research Program. Meeting attendees will use this input to set the key research priorities and requirements before the program begins wide-scale enrollment this spring.
Also, if you’re thinking about joining All of Us and want to learn more about the program, here’s some great background material to get you started. It’s one very important way that you, along with hundreds of thousands of other people from every walk of life, can participate in this historic project that will shape the future of medicine. As a matter of fact, Science magazine just selected All of Us as one of the scientific stories  that it predicts will make headlines in 2018!
 What’s Coming Up in 2018, Brainard J, Science. 2018 January 4 Cell. 2018 January 11; 172:1-14.
Share Your Ideas, All of Us Research Program (NIH)
All of Us Research Program (NIH)
I have some questions. What happens to patients who have a stigmatized disease; most of whom are women? What happens to patients who are outcast from appropriate medical care? …
In other words, what happens to the at least 1 million people in the U.S. and approximately 15 – 30 million people worldwide with the neurological disease Myalgic Encephalomyelitis (World Health Organization 1969 but also known as Chronic Fatigue Syndrome in the U.S.), of which 75% are unable to work and 25% are so sick they are housebound or bedbound; some unable to even speak and some who must be tube fed?
What happens to the millions missing medicine has excluded and who are mocked, joked about and misrepresented?
I’ll be signing up for “All of Us” if I’m able. You can then study what happens when a person gets mono and a severe strep throat at the same time and goes 34 years without appropriate medical care. Furthermore, I’ve been bedridden for the last decade and no longer have any medical care, all because of our failing medical care system for Myalgic Encephalomyelitis; which is now a public health crisis…
why do only 70% of those who become healthy grow a head of hair and get their original hair color back?
and why do we let our kids die of cancer when we know what it is and its cause. is almost 99 % curable.
Yes. A vaccinated vs unvaccinated study.
I am doing research on soil-transmitted helminths …
Research ME/CFS/CFIDS/SEIDMAN. there are many of us, some diagnosed, most probably not, but all of us suffer mightily with no diagnostic tests no medicine that works and all of us a drag on our long suffering relatives, caretakers and the economy. I had a great well paying job until this disease felled me in 93. Haven’t been able to work a day since. I LOST 20 I Q points, no one does that. Verified by ssdi shrinks (2). Please fund additional studies based on patient fund research out there. Try existing drugs to see if anything works. Please give us, the patient population and our supporters some hope for the future. Thanks.
Myalgic Encephalomyelitis, too many are suffering and have no hope.
Alzheimer’s,: Herbicides and Pesticides, take a closer look at the agriculture and golfing communities..do they have a higher incidents of Alzheimer?
Investigate the communal use of pesticides, not only on farms and golf courses but in communities for incidences of autism and its sensory issues on children, as well illnesses on adults. What are the common denominators?
Hidradenitis Suppuravata – The most painful, debilitating skin disease affecting the sweat glands . . . My heart is so saddened and determined the Cure is Here – 2018. Infected boils/cysts in the axillary glandular regions. Groin, genitalia, armpits, neck, breasts. These painful boils can get to a golf ball size – affects quality of life and unfortunately HS sufferers do end their life. HS has genetic factors, hormonal possibilities, does not discriminate gender (higher percentage females), age, race, demographics. On a Mission!
Serious medical people with serious funding for ME CHRONIC Fatigue,Fibromyalgia and morgellons disease. A veterinarian I talked to knew more about this than all the specialists I’ve seen! I rely on research done in other countries- shame on all of you for not taking these diseases seriously. Every doctor I see sends me off to another Specialist. until I go to everyone and no one has any answers or any interest. I had a very busy life, owned a business and had a 160 plus IQ. I have only gone downhill over the past 10 years, and now have morgellons a debilitating, disfiguring disease. I’m fairly certain that I got it from a dr. Who was seeing me in hospital during hurricane sandy where sanitation was disgraceful. She was wearing the boots in and out of hospital that she had on while standing in filthy water mucking out her horse stalls before coming to work. It was a terrible time for everyone touched by this national disaster and for me and for me a shorter life time I suspect.
Autism – I am curious as to the incidence of autism in the Christian Science community (very healthy lifestyle, medical exemption from vaccinations, does not consume the typical SAD diet) Vs the general population. Am wondering because I live in Boston (the center for the church) know many Christian Scientists, and autism appears to be NONEXISTENT in their population. Don’t know the reason why, but a preliminary study would be a start. That is, if we are open minded and really want to know the cause.