At the annual Board of Scientific Advisors meeting last Fall, Packard
Center scientists were advised to find new ways to identify ALS genes.
"DeCode's approach is unique and has been unusually successful," says
Center Director, Jeffrey Rothstein.

A just-announced collaboration between an Icelandic genomics company
and a team led by a Packard Center scientist offers a unique way to
search for ALS genes - either those that lead directly to the disease or
those that might predispose people to get it.

The company, called deCode genetics, specializes in finding genes for
common diseases, with an eye to developing therapy. So far, deCode has
located genes involved in more than 20 illnesses. Several of these
genes, including those implicated in the common form of stroke, another
linked with schizophrenia, and a third that triples a woman's risk for
osteoporosis, have been shown to play a key role in the biology of these
illnesses.

DeCode has created the largest genotyping facility in the world,
creating DNA fingerprints on patients and controls. They have also
developed informatics systems and statistical algorithms to find genetic
patterns that flag disease genes.

"Much of the company's success stems from their ability to quickly
generate high density DNA fingerprints in participating patients and
their family members. It lets them match genetic fingerprints with
specific diseases and follow them as they flow through the families,"
says Packard Center scientist Jonathan Glass, who's collaborating with
the deCode researchers.

"But for ALS research," he says, "We're more interested in the
gene-spotting tools they've developed." deCode has isolated more than
20,000 markers - distinctive patterns in the human genome - that serve
as reference points. "By collecting a person's DNA and singling out the
markers, you get a distinctive genetic fingerprint," Glass says. The
hope is to find that similar fingerprints pop up again and again in ALS
patients but not in those without the disease. That would highlight a
specific stretch of DNA that's suspect, one that might carry a gene that
needs to be investigated.

This summer, deCode allied itself with the Emory University School of
Medicine, where Glass is a neurologist/researcher, for a large-scale
gene-hunt focusing on many common diseases. "ALS is relatively rare.
Still, we approached deCode about ALS," says Glass, and now it's a
project funded by the Packard Center to bring together
clinician-scientists and their patients across the country.

"If you look at ALS in general," he says, "it certainly doesn't look
like a genetic disease. We know, of course, about the more rare
inherited forms. But sporadic ALS truly seems to be sporadic. Still,
other sporadic disorders, like Alzheimer's, have genes that predispose
people to the disease. We're trying to see if that's the case here."

The task ahead, he says, is to collect blood samples nationwide, where
as many as 400 patients and their parents will donate a sample for DNA
testing. "We'll get the word out when we're ready to do that," Glass
says.

Located in Baltimore, the Robert Packard Center for ALS Research at
Johns Hopkins University is a collaboration of scientists worldwide
working aggressively and rapidly to develop new treatments and find a
cure for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's
disease. It is the only institution of its kind dedicated solely to the
disease. Research conducted by the Center is meant to translate from
the laboratory bench to the clinic in record time. Scientists and
clinician members of the Center are unsurpassed at moving drugs reliably
and rapidly from pre-clinical experiments to human trials.

The nature of ALS shapes the Center's aggressive, results-oriented
scientific approach. ALS is a devastating, progressive neuromuscular
disease that causes complete paralysis and loss of function -- including
the ability to eat, speak and breathe -- and eventually, death. ALS
progresses quickly and is not curable. Most patients die within five
years of diagnosis.

To learn more about The Robert Packard Center for ALS Research at Johns
Hopkins, including the latest information on ALS research and treatment,
log on to www.alscenter.org.