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  • (disclaimer: the program discussed in this piece is a project of the parent organization of Baby’s First Test, Genetic Alliance)

    Within that first moment of embrace, your entire life changes. You look at those little feet, hold those tiny hands, and gaze into those innocent eyes knowing you have never seen anything more beautiful in your life. It is no question that you want to immediately protect your baby throughout their life because—let’s face it—no matter how old they get, they will always be your baby. Newborn screening is the first step to investing in your child’s health, but it is not the last. Doctor’s visits, immunizations, and countless other appointments throughout our children’s lives remind us how important it is to teach kids to take care of themselves and to be aware of their health. Health research plays a major role in how kids will actively participate in their health as they grow. We gain more knowledge about diseases, health conditions, and preventative measures through health research, making it a vital tool in the decision-making process.

    Now there is a new way to stay connected not only to your own health—and your child’s health—but also to research:  Registries for All (Reg4All)!

    Reg4All is the world's first participant-controlled, cross-disease health data registry. Designed to inspire individuals to take control over their health, the goal of Reg4All is to help people find better treatments for health conditions and to simplify participation in research studies. The Reg4All team believes in the radical idea that patients and researchers should be able to join an online network that links the two together in the spirit of sharing information for the greater good. Individuals gain access to potentially life saving clinical trials information; researchers gain access to a centralized database of participants; and both groups share data freely (respecting each participant's custom sharing/privacy settings, of course!) in BOTH directions to improve health outcomes across populations. Reg4ALL is important even to individuals who do not wish to participate in research or clinical trials because it allows people to take an active role in research and healthcare by making their voices heard. For more information on Reg4All, please visit

    Genetic Alliance, the health advocacy non-profit behind Reg4All, won 1st place in the Transforming Health Systems Challenge sponsored by Ashoka Changemakers and Boehringer Ingelheim. See the announcement of Reg4All's win on Ashona Changemakers's website:

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