| Federal/Private Partners Launch Resource for
Diabetic Kidney Disease Gene Studies
The National Institutes of Health (NIH), Juvenile Diabetes Research
Foundation (JDRF), and Centers for Disease Control and Prevention
(CDC) announced today the availability of the largest single collection
of biosamples and data for research on the genetic causes of kidney
disease in type 1 diabetes.
The Genetics of Kidneys in Diabetes (GoKinD) collection has nearly
10,000 DNA, serum, plasma and urine samples, plus genetic and clinical
data, from more than 1,700 adults with type 1 diabetes in the United
States and Canada. Of those, 818 have had diabetes at least 10 years
and have developed kidney disease, a common complication of diabetes.
The other 893 have had diabetes at least 15 years but do not have
kidney disease. Also in the collection are data and samples from
1,096 parents (548 sets).
“GoKinD is a tremendous resource. We’re thrilled about
the promise it represents,” said Rebekah Rasooly, Ph.D., who
oversees the project for NIH and directs genetics and genomics programs
at NIH’s National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK). “We fund research all the time, but
this kind of project reflects a new way of thinking. GoKinD is a
gift that will keep on giving, and we are deeply indebted to the
individuals and families who made this invaluable resource possible.”
Researchers can apply for DNA, extensive clinical data and some
genetic data from GoKinD at www.gokind.org/access;
serum, plasma and urine samples will be made available later. Methods
of treatment, insulin doses, complications, smoking history and
other data have been documented for all GoKinD participants. Also,
DNA has been genotyped for genes well-known to predispose to type
1 diabetes. To protect the privacy of patients and families, researchers
do not have access to names and other identifying information.
“This study is of exceptional quality and offers a unique
opportunity for genetic research,” said Patricia Mueller,
Ph.D., chief of CDC’s diabetes and molecular risk assessment
Gathering information and samples of the kind, quality and quantity
that individual researchers alone would be unable to collect, GoKinD
provides a rich means for learning about the genetics of both kidney
disease and type 1 diabetes.
“GoKinD will help us tease out genes linked to kidney disease
versus those that are primarily important causes of diabetes itself,”
said Concepcion R. Nierras, Ph.D., director of research for JDRF.
Both NIH and JDRF will separately consider requests to fund research
on GoKinD data and samples. NIH grant applications are at http://grants.nih.gov,
and resources for type 1 diabetes research are listed at www.niddk.nih.gov/fund/diabetesspecialfunds/funding.htm.
JDRF grant applications are under the research tab at www.jdrf.org.
Once found, genes for susceptibility to kidney disease can be studied
to find out what they do, how they do it and how researchers might
intervene to prevent the disease or improve treatment. Studies have
already linked several genes to susceptibility to type 1 diabetes,
but scientists are confident that more genes exist and that other,
as yet unknown, genes increase susceptibility to complications such
as kidney disease. (Learn more about genetic factors in diabetes
“These genes alone don’t explain the complete genetic
risk for diabetes, and little is known about genes for kidney disease
or other complications. Yet, there is clearly a genetic risk for
complications, because they run in families and among certain populations,”
said Paul L. Kimmel, M.D., F.A.C.P., a nephrologist working part-time
with Rasooly and NIDDK on GoKinD. Kimmel also directs the renal
disease and hypertension division at George Washington University
Medical Center in Washington, D.C.
Diabetes is the leading cause of kidney failure in the United States.
In 2002, treatment of kidney failure cost Medicare and private insurers
$25 billion for more than 400,000 people, 40 percent of whom had
diabetes. Twenty to 40 percent of people with type 1 diabetes will
develop kidney failure by the age of 50, but some develop it before
the age of 30.
Type 1 diabetes accounts for up to 10 percent of people diagnosed
with diabetes in the United States (up to 1 million people). This
form of diabetes usually strikes children and young adults, who
need several insulin injections a day or an insulin pump to survive.
Insulin, though critical for controlling blood glucose, is no cure.
Most people with the disease eventually develop one or more complications,
including damage to the heart and blood vessels, eyes, nerves, and
NIH, JDRF and CDC collaborated on GoKinD. NIH supported the study
through a special fund for type 1 diabetes research established
by Congress in 1997 and coordinated by NIDDK. In all, the fund will
provide $1.14 billion between fiscal years 1998 and 2008, supplementing
funds available for type 1 diabetes research through regular NIH
Under JDRF, the Joslin Diabetes Center and the George Washington
University (GWU) Biostatistics Center (and its associated clinical
centers) each recruited about half the patients and their parents.
GWU will also distribute GoKinD data. CDC provided genotyping data
for the major type 1 diabetes risk factors, HLA DRB1, DQA1, and
DQB1 and the -23 insulin gene single nucleotide polymorphism (SNP).
In addition, CDC will distribute samples and conduct research on
the collection. Biochemical clinical data were provided by the University
Investigators and centers that recruited participants and provided
clinical and genetic data are:
- Stephen A. Brietzke, Univ. of Missouri
- David Brillon, New York Presbyterian Hospital, Cornell Univ.
- George A. Burghen, Univ. of Tennessee
- George W. Burke, Univ. of Miami
- Patricia Cleary, George Washington Univ. Biostatistics Center
- Suzanne Cordovado and Patricia Mueller, CDC
- Debra Counts, Univ. of Maryland Medical System
- James Desemone, Albany Medical Center
- Steven V. Edelman, Univ. of California San Diego
- Carla Greenbaum, Virginia Mason Research Center
- Richard A.Guthrie, Mid-America Diabetes Associates, P.A.
- Irene Hramiak, St. Joseph's Health Care, Univ. of Western
- Mark Johnson, Univ. of North Carolina at Chapel Hill
- Lois Jovanovic, Sansum Medical Research Center
- John I. Malone, Univ. of South Florida
- Michael Mauer and Mike Steffes, Univ. of Minnesota
- Michael E. May, Vanderbilt Univ. Medical Center
- Larry Melton, Baylor Univ. Medical Center
- Mark E. Molitch, Northwestern Univ.
- Robert E. Ratner, Med-Star Clinical Research Center
- John Rogus, Adam Smiles and James Warram, Joslin Diabetes
- William L. Sivitz, Univ. of Iowa
- Maria Szpiech, Medical Univ. of South Carolina
- Neil H. White, Washington Univ. School of Medicine
- Bernard Zinman, Mount Sinai Hospital, Univ. of Toronto