An Open National Data Registry for Type 1 Diabetes

If you ever get discouraged feeling that nothing impactful is being done to improve Type 1 diabetes at the point of care (getting doctors on board, etc.), have a look at the Helmsley Charitable Trust. I too was pretty unfamiliar with their efforts until recent conversations on my conference tour through Orlando.

Since April of 2009, Helmsley has begun a multi-million dollar Type 1 Diabetes program that consists of four parts: a research consortium, a technology focus including work on the artificial pancreas, outreach and support to current patients, and — notably — the development of a new national “biorepository and patient registry.” (You can read about their work here, and in much more detail in a PDF document here.)

Helmsley held a dinner banquet at the ADA Conference, which I unfortunately did not attend (didn’t make the VIP cut?), but I have learned that what they were showcasing there was this emerging patient registry, called T1D Exchange. It sounds pretty darn exciting.

Working off a $150,000 grant for the first year, the organization has begun surveying scientists, organizations (including pharma) and also patients to create “a framework for a central depository of tissue samples and clinical records in order to accelerate and complement ongoing research and assist in patient care.”  The goal of the registry is to help speed research on topics like autoimmunity, beta cell replacement and regeneration, and metabolic control — by providing large natural history samples of the disease, as well as facilitating testing of new therapies.

Until now, cases of Type 1 diabetes have not been reported and documented on a national level, so the NIDDK has precious little information on us.

This new registry will not only aid research, but also assist physicians and advocates in their day-to-day work. For example, remember the ADA bemoaning the lack of good national data on instances of Type 1 diabetes right here at the ‘Mine?

{A lack of specific diabetes data} “really does hamper us on a national level — for knowing who’s got what and where. We don’t know where to put our energies. How do you base policy on only the vaguest of data?”

— Matt Petersen, director of information services for the American Diabetes Association.

Also, this kind of sweeping information should help clear up some of the confusion about “oddities” like LADA (latent autoimmune diabetes in adults). Is it such an oddity, after all?

I hear that Helmsley is shooting for 100,000 members of this new registry, but realistically expects to get about half that many in the coming year. I don’t yet know the mechanics of how the registry is being compiled, but to me, the need is clear. I can’t tell you how many times another journalist or author pinged me to ask where they can get national statistics on cases of Type 1. The reaction was always disbelief when I had to reply, “there aren’t any.”

In his book Diabetes Rising, author Dan Hurley laments this too. He profiles some counties on the East Coast where children seemed to be getting Type 1 diabetes in “statistically significant” numbers.  Was there something going in that community to cause an epidemic? No one knows, in part because there was no way to validate whether the influx of new cases was really so unusual.

Helping with this project is the Jaeb Center in Florida, an independent medical research center. (For further encouragement, have a look at their long list of T1 diabetes projects.)

What would really be impactful, some of us at the ADA conference mused, would be if pharma companies are willing to share their research data in an open environment like the T1D Exchange registry. A big boost for unbiased research? One can only hope.