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The Dream of a Non-Profit Patient-Centric Research Network (PCRN) for People With Diabetes

Kids with diabetes are at high risk for severe changes in blood sugar levels that often lead to seizures, coma and sometimes death. This in spite of all the efforts to find a cure as well as efforts to develop better tools for injecting insulin and measuring blood sugar levels. Our plan for 'getting there' involves a combination of better patient tools and methods for managing blood sugar levels, clinical research to make sure we really understand what works and what doesn't and to register the population including detailed personal and background information about the onset of this diabetes thus making it easier to accelerate advancements across the board.

Diabetes GeoMapping Project

Recruiting Patients to the Sweet Kids Network

The long pole of clinical research is often the time required to recruit qualified patients into a new research trial. Depending on the focus of the trial, a very limited group of unknown patients may be required and finding them in sufficient numbers is often an expensive and time consuming process. Combine that with the fact that most doctors claim to be overworked and don't have the extra time it takes to actively recruit patients and you've got a serious barrier to finding answers.

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Another example of this research is the study of dynamic metabolic processes in newly diagnosed type 1 diabetes (also known as Insulin Dependent Diabetes Mellitus or IDDM). If only there was a way for researchers to tap into a pool of patients with detailed profile information including a way to contact these patients for participation in an observational study that would help shed light on things like the process of beta cell destruction by the body's own immune system? Further, what if researchers had a real-time connection to daily biometric data and behavioral insight that allowed researchers for the first time to witness what is actually happening with that patient BEFORE recruiting into a study?

Diabetech's patient network and the platform we use to support them has been building since our first trial in 2002. We currently possess reliable patient data from willing patient research participants that goes back as long as 6 years for some patients. What we propose to do now is expand the focus of our research programs to include this notion of a perpetual longitudinal study supported by our industry leading diabetes programs platform.

In 2001 following my daughter’s diagnosis with type 1 diabetes, I knew we needed a simple and automatic connection to my sweet kid while she’s at school or out and about just being a kid. The result of that need and a lot of hard work and sacrifice is the GlucoMON® wireless glucose meter and real-time remote glucose alerts (not to mention the automatic trending logbook for improving blood sugar control). Who wouldn't want that?

The GlucoMON is part of the Automated Diabetes Management System (ADMS) already in operation since 2002 keeping our kids safe. How about coming together on a project to equip every kid with diabetes with a wireless biometric monitoring connection that can help the school nurse and the child’s parents keep track of him/her and intervene before bad things happen? In addition to the health risk, schools are spending an inordinate amount of time trying to be their substitute parent primary caregiver.

This solution involves off the shelf wireless technology, off the shelf medical diagnostic glucose meters, advanced analytical technology, accurate diagnostic testing and a service component to make it all work seamlessly. Imagine a real-time system for every kid in school used by parents to help nurses and teachers!