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Principal Investigator:  Patricia A. Cleary, M.S.

The Coordinating Center is viewed as a long-term collection and distribution resource for the diabetes research community, and plays an important role in support of research targeted at finding a cure for Type 1 diabetes and its complications. Coordinating Center studies will assemble, maintain, and distribute samples and information from populations that may be used to study the genetics of Type 1 diabetes.

The first project of the Coordinating Center was a collaboration with the Diabetes UK (previously known as the British Diabetic Association, BDA) on the study of the genetics of susceptibility to diabetic nephropathy. This study is called The Genetics of Kidneys in Diabetes, or GOKIND, Study.

The risk of kidney complications in type 1 diabetes appears to have a considerable genetic component. This study assembled a large data resource for researchers attempting to identify causative genetic variants. The types of data collected allowed traditional case-control testing, a rapid and often powerful approach, and family-based analysis, a robust approach that is not influenced by population substructure.

In total, 600 case trios, 500 control trios, 500 singleton cases and 500 singleton controls were collected. Half of the samples were collected at the Joslin Diabetes Center and the other half were collected from around the country by researchers at The George Washington University. DNA samples were processed by scientists at the University of Minnesota and stored at the U.S. Centers for Disease Control and Prevention. Stored samples were available to the research community through a mechanism that has been determined by JDF. Clinical characteristics of patients, which are stored in a central database, are also made available to participating scientists. A similar collection is being carried out in the United Kingdom.

We collected the specified number of samples within a three year period, at which time qualified researchers were allowed to access samples. The JDF considered making a portion of the samples available at an earlier point in time.

Diabetic nephropathy is a major concern in type 1 diabetes. Those afflicted with end-stage renal disease often face dialysis or renal transplant. Mortality among this group is also high. This data resource allows researchers to test hypotheses that might explain why diabetic kidney disease clusters in families. This resource also is suitable for studying other complications and type 1 diabetes itself. For example, a total of 1,110 diabetes case trios was available at the end of three years.)