New Web Resource for Accessing Information on Genetic Diseases

NLM's National Center for Biotechnology Information has collaborated with the Genetic Alliance to launch a new Web site feature designed to help patients, care givers, health professionals, and others easily locate and navigate the vast array of information on genetic disorders that is available from the NLM.

The "portal" into NLM resources brings together, on one Web page, links to a wide range of information for patients and caregivers-from basic descriptions of a disease and its symptoms to the most current scientific research. It is designed to serve the needs of a broad spectrum of users, ranging from those who are just beginning to learn about a disorder to those who understand complex scientific information, including those who want to track emerging information over time.

What Can One Find Through the Genetic Alliance/NCBI Resource?

• Disease descriptions from NCBI's Genes & Disease online book
• Disease and genetic information from Genetics Home Reference (www.ghr.nlm.nih.gov)
• NLM MedlinePlus Web pages, which provide extensive links to information on diagnosis and treatment of diseases, physicians in the field, relevant health organizations, and more (www.medlineplus.gov)
• A guide to genetic testing, and directories of geneticists and gene testing laboratories, from GeneTests (www.genetests.org), a University of Washington service funded by NIH
• Clinical trials that may be available to those with genetic diseases, via www.clinicaltrials.gov
• Medical dictionaries and encyclopedias
• Primers and tutorials on DNA, genetics, genome mapping, and other scientific subjects
• The latest research published in scientific journals, via PubMed (www.pubmed.gov) and PubMed Central (www.pubmedcentral.gov)
• Technical information about the genes, DNA sequences, chromosomes and protein structures associated with genetic diseases

How Does it Work?

This new resource is accessed through the "Disease InfoSearch" function on Genetic Alliance's Web site, www.geneticalliance.org. After selecting a genetic disorder from an alphabetic list, users see links for various information sources, including "Research and Genetic Information: National Center for Biotechnology Information, National Library of Medicine, NIH". Clicking on the link brings users to a customized page where an automatic search for their disorder has already been conducted within the NLM resources.

"We are pleased to collaborate with Genetic Alliance on this project," said David Lipman, M.D., Director of NCBI. "Genetic Alliance is dedicated to improving the lives of those with genetic disorders, and we share their goal of improving public access to information." The Genetic Alliance is a nonprofit organization that increases the ability of advocacy organizations to help the millions of individuals and families living with genetic conditions.

Last reviewed: 04 May 2007
Last updated: 04 May 2007
First published: 04 May 2007
Metadata| Permanence level: Permanence Not Guaranteed