Summer 2019: A Summer of Fun, Learning, and Influencing the Future of Type 1 Diabetes

Posted on: September 28, 2019

The T1D Exchange Registry (hereon referred to as the Registry) is a research study designed to harness the power of people with type 1 diabetes. By completing a questionnaire once a year and opportunities to join other type 1 diabetes research, participants can add their voices, experiences, and data to a body of evidence that grows over time.

Following the launch of the Registry in June, Registry team members have hit the road to spread the word about this groundbreaking study and show people how they can make a difference in type 1 diabetes research.

Our first stop was sunny Orlando, Florida where the Registry team and other members of the T1D Exchange family attended Children with Diabetes’ 20th annual Friends for Life conference. Hosted at Disney’s Coronado Springs Resort, the conference brings together top clinicians, physicians, researchers, and families for a week full of educational sessions, research opportunities, and (most importantly) unwavering support for families affected by type 1 diabetes. The Registry team was able to pass out fun gifts, conduct in-person interviews with families, and sign people up for the Registry.

At Friends for Life, we could see the Registry fueling hope for participants and their families.

Many people commented that they were surprised how easy and simple the Registry made research. After just a couple questions, people were signed up and could continue to enjoy the conference. Participants also expressed excitement for their ability to influence the future of type 1 diabetes research and care through sharing their experiences.

These experiences helped us shape our new marketing campaign, InfluenceT1D, which launched shortly after the Friends for Life conference.  The campaign focuses on putting power into the hands of who really matters in healthcare: the patients. Through the Registry, we want everyone to feel as though they can use their voice to shape type 1 diabetes care and influence the day-to-day lives of people living with this disease. Check out our new campaign and look here.

So what’s next?

All of the work this summer has led to the building of what we hope will be the most comprehensive data set of type 1 diabetes in the United States. So far, over 2,000 people with type 1 diabetes and parents/guardians of a child with diabetes have registered.

Our work is just beginning. This fall, the Registry team will continue to travel to different cities to talk about research. At different walks and events, attendees will be able to meet the team, ask questions about the Registry or research in general, and sign up to participate.

If you are not able to attend an event this fall – don’t worry! Participants can join the Registry using their mobile device/computer from anywhere in the United States.

If you have a suggestion of a walk or conference that you think we should attend, or if you have any questions about research participation, please feel free to contact us at Registry@T1DExchange.org or (617) 892-6165.