There has been a push in recent years to put a patient-centered focus front and center in healthcare and research. A 2016 FasterCures report chronicles that there has been a clear shift in the national healthcare agenda to focus on patient-centered initiatives. Examples of this include the 2010 creation of the Patient-Centered Outcomes Research Institute (PCORI) by Congress, the Food and Drug Administration’s (FDA’s) introduction of the Patient-Focused Drug Development initiative in 2012, and the National Institutes of Health (NIH) opening of the All of Us Research Program in May 2018.
Despite these new efforts, participation in clinical trials and research remains very low in the United States and globally. The 2015-2016 Global Participation in Clinical Trials Report from the FDA states that just 40,835 US citizens participated in clinical trials in 2015 and 2016. That’s simply not a large enough pool of participants to get a complete picture of patient needs.
T1D Exchange is working on breaking down barriers to research participation by bringing research out of the clinics and academic hospitals and closer to the lives of patients. Data can be collected from anywhere in the world and not just the clinic – it’s time to tap into that potential. Smartphones, fitness trackers, continuous glucose monitors, and health applications all collect data and, with permission, can provide a way for researchers to take a better look at the populations missing from current research efforts.
T1D Exchange Registry strives to make research more accessible by offering an online-based research platform, with mobile capability slated for 2019. T1D Exchange has made a strong commitment to patient-centered approaches in the past, but we renewed this commitment with the launch of T1D Exchange Registry in early November. The Registry aims to collect long-term data on life with type 1 diabetes so the needs of the type 1 diabetes community can be better met by drug and device developers. Through the use of surveys and long-term follow-up, the Registry will establish a powerful data set to help accelerate therapies and improve care for people living with type 1 diabetes.
Gathering real-world evidence is impossible without the the type 1 diabetes community powering the effort. We invite you to join T1D Exchange Registry today.
Want to learn more or join T1D Exchange Registry? Click here.
You can also contact the Registry team at Registry@T1DExchange.org if you have questions or concerns.
Caitlin Rooke is the Lead Research Study Coordinator for the Registry. Her background is in clinical research and includes a history of working in the hospital setting, the pharmaceutical industry, and non-profit organizations. She is passionate about research registries and the discoveries they can power.