Open Access News

News from the open access movement

Tuesday, May 01, 2007

OA research on genetic diseases

The Genetic Alliance has created Disease InfoSearch, a portal to the extensive and OA research on genetic diseases within the US National Library of Medicine.  From yesterday's announcement:

Genetic Alliance today announced a new website 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 National Library of Medicine (NLM), a part of the National Institutes of Health (NIH). The "portal" into NLM resources brings together, on one webpage, 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. This valuable new resource was developed in collaboration with the National Center for Biotechnology Information (NCBI), a division of NLM that creates and maintains public databases of biomedical information.

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 
  • NLM Medline Plus web pages, which provide extensive links to information on diagnosis and treatment of diseases, physicians in the field, relevant health organizations, and more 
  • A guide to genetic testing, and directories of geneticists and gene testing laboratories, from GeneTests...
  • Clinical trials that may be available to those with genetic diseases
  • 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 and PubMed Central 
  • Technical information about the genes, DNA sequences, chromosomes and protein structures associated with genetic diseases....

"Compiling all these sources of information together in a single location, and in an automated format with pre-computed search results, will make it significantly easier for patients and others to find the information they need about genetic disorders," said Sharon Terry, M.A., President and CEO of Genetic Alliance. "Information is a vital component of our vision of empowering consumers and this joint project with NCBI brings us one step closer to achieving that vision," she said.

"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."