January 7, 2004
Reykjavik, ICELAND, January 7, 2004 — deCODE genetics (Nasdaq:DCGN) and The Simons Foundation, a New York-based organization supporting advanced research in the basic sciences, today announced the launch of the first ever population-based study of the genetics of autism and autism spectrum disorders (ASDs). Funded by a two-year, $2.8 million grant from The Simons Foundation, deCODE has begun a population- and genome-wide gene discovery effort aimed at identifying the key genetic components of these disorders. It is well established that these conditions run in families, but the identification of the specific inherited causes may provide valuable insight into the neurological dysfunctions they evoke. Knowledge of the biology of these disorders may in turn clarify the role of environmental factors and contribute to the development of new methods of diagnosis and treatment.
The deCODE study will bring together detailed genotypic and clinical data on individuals diagnosed with autism and ASDs, as well as genotypic data and information from detailed questionnaires on aspects of social communication and other behavioral characteristics from first and second degree relatives. In total, the study aims to include several hundred individuals with autism and ASDs, and several thousand of their relatives. The ability to assemble such comprehensive clinical and behavioral data for population-wide linkage analysis offers an unprecedented opportunity not only for identifying key genes linked to these disorders but also for pinpointing which elements of these complex phenotypes are inherited.
In this program the deCODE team is working with the National Diagnostic and Counseling Center, which carries out diagnostic evaluations and oversees therapy for children and adolescents with autism and related spectrum disorders throughout Iceland, as well as the Icelandic Autism Support Network, an organization of families and caregivers, and physicians and psychologists at the Department of Child and Adolescent Psychiatry at the National University Hospital. Dr. Catherine Lord of the University of Michigan, a renowned expert in this field, is serving as a clinical advisor, assisting the deCODE team in the development and analysis of the questionnaires that will be given to family members. The questionnaires are designed to capture often subtle behavioral and personality traits which, although not clinically relevant on their own, may in certain combinations or in extreme forms constitute important components of these disorders.
“We are very excited to begin tackling the genetics of autism and autistic spectrum disorders. Our discoveries in other neurological and behavioral disorders like schizophrenia, anxiety and depression demonstrate that our population approach has the power to pull out major genes even in the most complex disorders the basic biology of which is little understood. I am confident that we will succeed in autism as well, and we and our collaborators are very grateful to the Simons Foundation for their support for this project,” said Kari Stefansson, CEO of deCODE.
“We are very pleased to be working with deCODE on this project. It represents a crucial component in our foundation’s new program to search out the root causes of autism, a condition which affects very many people around the world. We believe that deCODE’s proven expertise has a great chance to prove highly successful and we are delighted to be associated with so fine an organization,” said Jim Simons, founder of the Simons Foundation.
Autism and autism spectrum disorders are a group of complex neurodevelopmental disorders involving a range of delays and difficulties in social interaction and communication skills. Individuals with autism spectrum disorders, such as Asperger’s Syndrome and certain Pervasive Developmental Disorders, exhibit developmental problems in some but not all of the areas as do those with autism. The number of people diagnosed with autism and ASDs has risen rapidly in recent years, although because so little is known about the neurological and environmental causes of these disorders it is unclear whether this increase is due to better diagnosis or to an actual increase in the prevalence of the phenotype. According to the Centers for Disease Control, these disorders may affect as many as 1 in every 250 people in the U.S.
deCODE is using population genetics to create a new paradigm for healthcare. With its uniquely comprehensive population data, deCODE is turning research on the genetic causes of common diseases into a growing pipeline of products and services — in pharmaceuticals, gene and drug discovery, DNA-based diagnostics, pharmacogenomics, bioinformatics, and clinical trials. deCODE’s pharmaceuticals group, based in Chicago, and deCODE’s biostructures group, based in Seattle, conduct downstream development work on targets derived from deCODE’s proprietary research in human genetics as well as contract service work for pharmaceutical and biotechnology companies. deCODE is delivering on the promise of the new genetics.SM Visit us on the web at www.decode.com.
About The Simons Foundation
The Simons Foundation is a private family foundation based in New York City, whose primary mission is to fund advanced research in science and mathematics. A secondary mission of the foundation is to help children with learning differences. Bridging these two areas, the Simons Foundation has recently undertaken a major initiative supporting research into autism and its treatment.
Any statements contained in this presentation that relate to future plans, events or performance are forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. These forward-looking statements are subject to a number of risks and uncertainties that could cause actual results to differ materially from those described in the forward-looking statements. These risks and uncertainties include, among others, those relating to technology and product development, integration of acquired businesses, market acceptance, government regulation and regulatory approval processes, intellectual property rights and litigation, dependence on collaborative relationships, ability to obtain financing, competitive products, industry trends and other risks identified in deCODE’s filings with the Securities and Exchange Commission. deCODE undertakes no obligation to update or alter these forward-looking statements as a result of new information, future events or otherwise.