The Allofus research program or the Precision Medicine Initiative, launched by the world’s largest research funding agency – the US Government’s National Institutes of Health (NIH), has begun enrollment of 1 million American participants in first of its kind public precision health research initiative. https://www.joinallofus.org/en/get-started-step1
Dear fellow community members including women and minorities of various ethnicity residing in the United States,
It is a fortuitous point in time that I write this open letter in my personal capacity as a citizen scientist. The ground-breaking, paradigm shifting, Precision Medicine Initiative, now called the AllofUs Research Program, has launched enrollment of a million Americans into this 10+ year health research study. The new approach to understanding health, wellness and disease is data-driven. This study is inviting participants from all over the United States to engage in the process of clinical research. The first step towards development of diagnostics and therapies for a given disease is to understand the normal or healthy context in comparison to the changes that cause or occur in a disease state. This requires systematically gathering information about the participants health, demographics, genome sequence data, lab results, electronic health records and comprehensively characterizing a large group (cohort) of people. Data thus gathered will serve as a baseline to understand health, aging and disease.
This new paradigm of doing clinical research begins by acknowledging patients or healthy volunteers participating in these studies as key partners in advancing biomedical research and development of vaccines, diagnostics and therapies. The participants own their data and will have access to their own data at all times. Most, if not all participants, recognize the importance and impact of sharing their individual data for the greater good of humankind. This altruistic participation will help the research and patient community at large for the rest of the generations to follow. Just imagine how polio vaccine eliminated that entire disease in a single generation in India. Or simply the hundreds of deadly diseases that have now become manageable medical conditions with the advances in medicine. Each of these advances did not help patients of the past – but their vision and altruism to help patients of the future has already paid in exponential dividends.
It is critical that this cohort study has good representation from all ethnic groups and diverse individuals as this will be a goldmine of data that will guide research for the next few decades. Hence, I invite each one of you to look into this very important opportunity for you to personally contribute to this AllofUs research program that has enormous potential to improving human health for a variety of conditions with unprecedented global impact.
The program is currently enrolling only Adults 18+ residing in the United States. It is critical that the million people are collectively representative of the general population who will ultimately benefit from the drugs and devices that result from this research. Hence, diversity of participants including gender, race, ethnicity and other factors is of utmost importance.
To get started or to learn more, visit: https://www.joinallofus.org/en/get-started-step1