The All of Us Research Program (The Program) at NIH is AWESOME. Here’s what I learned at Rare Disease Day at NIH (#RDDNIH) and what you should know too, so you can participate and contribute to medical advancement for all diseases:
The Program hopes to engage one million or more volunteers to provide health and lifestyle data on themselves, that includes a broad diversity of people in the U.S. The idea is that a massive database will be created from this info, and by allowing researchers to access this soon-to-be database, medical breakthroughs will be accelerated.
This isn’t just a study on one disease, but rather a movement made to impact a lot of diseases.
The Program’s Team is super creative in trying to create this massive data set, considering the security that is involved.
Their core values drive their approach and their foundation. First, The Program is open to all individuals to reflect the diversity of the U.S. The participants aren’t just “subjects”, they are also partners. Additionally, the program wants to instill trust and transparency, so in the spirit of that, participants will actually have access to the information and data about themselves.
Program data will be accessible by key players to help empower research around health and diseases. Though the data is accessible, the program will adhere to PMO Privacy and Trust Principles, and PMI Data Security Policies. The program aims to be a catalyst for innovative research programs.
So, what’s their status and how can you participate? They have a data research center, built in part by Vanderbilt, where the data will be held. Researchers will physically have to go there to get the data, for security purposes. Additionally, the Mayo Clinic is building a Bio Bank to be a part of this program. Participant Technology Centers will enable individuals to enroll if they aren’t near any closer sites. There are also established Healthcare Provider Organizations serving as enrollments sites, though those are also in development. Beta-phase of The Program starts THIS Spring, with the national launch following it’s overall approval.
Current All of Us Research Program partners are spread throughout the U.S., and they are among some of the country’s largest medical centers.
While there are policy challenges and the program is still in development, plans for it’s growth and ease of data submission are already in place that include mobiles, wearable sensors and more, to help capture an immense amount of data from a diverse population.
Do you want enroll? Soon, you can! You can do so as a direct volunteer online or over the phone, or at any of the Healthcare Provider Organizations. You must be 18 or older, fill out a consent form, and complete a few surveys about your health habits, history, medications and more among other things. Keep abreast of the developments on this program here!
