Robin Williams' death puts focus on UM doctor's efforts for depression registry

The death of comedian Robin Williams has given new meaning to a plan outlined by John Greden, M.D., executive director of the University of Michigan Comprehensive Depression Center in Ann Arbor, to expand a national clinical data registry that seeks to improve the care of patients with depressions and bipolar illnesses.

Greden told Crain’s that Williams’ death — along with thousands of others suffering from depression — could have been prevented with greater understanding of the link between depression and chronic diseases.

Williams was diagnosed with early-stage Parkinson’s disease, a progressive disorder with no cure that affects your nervous system and slowly inhibits movement.

“The untimely death of Robin Williams reminds us that depression is a serious life-threatening illness and needs to be recognized as a major public health crisis. It also highlights the overwhelming need for a registry such as this one,” said Greden, a psychiatrist who also is founding chair of the National Network of Depression Centers, which includes UM and 20 other academic depression centers.

“By conservative estimates, one in six Americans has lifetime experience with depressions, bipolar illnesses, or related disorders. An astounding 75 percent to 80 percent of deaths by suicide can be traced to these illnesses,” said Greden, who said he was always a big fan of Williams.

“He was one of the quickest thinkers and minds I ever saw,” said Greden.

Last week, the NNDC and Ann Arbor-based Altarum Institute announced a plan to raise funds and jointly develop a comprehensive national clinical data registry to improve the care of patients with depressions and bipolar illnesses.

Greden said the goal is to create a registry of more than 10,000 patients over five years that will enable more than 500 researchers to study new treatments and research projects. The registry also will help facilitate patient referrals.

Currently, the NNDC has a registry with about 1,200 patients from its 21 clinical sites that includes JohnsHopkins UniversityMayo ClinicDuke University and Harvard University, Greden said.

“A registry of this size and scale is long overdue,” said Dan Armijo, vice president of Altarum Institute, in a statement.

Altarum has experience in developing registries, information technology and grant development, Armijo said.

Greden said NNDC and Altarum hope to generate up to $2 million in additional financial support from corporations, foundations and federal agencies.

“We now have a proof of concept. Our 21 sites collaborate on research, but we have a small sample size and need large enough samples to show the link between depression, genetics and medical illnesses,” Greden said.

Modern research is developing individualized treatments for cancer, heart disease and even brain disorders like depression, Greden said.

“Each type of chronic disease could require a different treatment based on genetic abnormalities,” he said. “Scientists will find biomarkers through lab tests that will identify the underlying cause and a treatment.”

Greden said 30 percent to 40 percent of depressions don’t have the right treatment.

“A registry would enable us (researchers and clinicians) to sort out the causes and find the treatments that work in a large sample to understand how to treat each individual, such as Robin Williams. His life potentially could have been saved if we knew more. And, we’d all be better off for it.”

Original Story in Crain’s Detroit Business, Originally Published: August 22, 2014