Webliography for Clinical Geneticists

Compiled by Suzy Holt, MLS, AHIP for ASHG Edushare 1996
Please Note: This list is not considered as an endorsement of any particular service or organization by ASHG/GSA/ACMG/ABMG/ABGC/APHMG.

OMIM Search Screen: Find the most recent updates to entries in McKusick's catalog of single gene disorders, Mendelian Inheritance in Man. This essential reference includes extensive bibliographies, links to OMIM's disease gene map and to the image archive at Cedar Sinai Medical Center

HELIX: Find laboratories doing molecular diagnostic testing for genetic conditions. Registration is required; access is restricted to health professionals. Instructions for registration available online.

GENLINE: This prototype electronic textbook contains expert-authored, peer-reviewed synthesized clinical information on genetic conditions for which molecular testing is available. Now is an excellent opportunity to provide feedback on this evolving resource.

Dysmorphology Discussion Board - DDB: A password-protected website to which clinicians can submit clinical features, images, and x-rays of unknown cases for review by colleagues. Apply for password access online to one of the editors, Robin M. Winter.

The Dysmorphic Human-Mouse Homology Database (DHMHD): A companion resource to DDB providing lists of phenotypic features for human cytogenetic aberrations, human dysmorphic syndromes, and mouse syndromes.

The Gene Letter: Electronic genetics newsletter provides full text articles on a range of topics in medical genetics. A project of the Shriver Center and the U.S. Department of Energy.

National Center for Genome Resources - Genetics and Public Issues provides full text resources with focus on education and ethical issues around genetic research, diagnostics, treatments, and gene therapy.

Human Gene Map: Featured genes are also linked to articles from the journal Science Online

HUM-MOLGEN: A moderated communication forum in human molecular Genetics with an international editorial board and thousands of worldwide subscribers. Several areas of special interest are available.

Clingen-L Clinical Genetics Mail List: To participate in this forum for clinical geneticists, send email to listserv@listserv.utoronto.ca with the message: subscribe clingen-L Your Name
(Remember! your communications in a discussion group are not necessarily private)

Clinical Genetics Cases at Jefferson: Sorry! this resource is no longer available to the public at large

Directories and Indexes to Resources in Genetic Medicine

Information for genetics professionals - created and maintained by genetic counselor Debra Collins for clinical geneticists and genetic counselors.

Genetics webliography: Selected and annotated by Len Davidson, Librarian, Georgetown University Medical Library

Medical Matrix - Genetics-Clinical: Provides "selected, ranked, peer-reviewed, annotated, continuously updated, full-text patient care resources". Includes news, articles, reference documents, practice guidelines, cases, textbooks, and forums.

CORN: The Council of Regional Networks homepage.
Regional networks with Websites include:
GLARGG: Great Lakes Regional Genetics Group provides organizational information, data, and project descriptions. Information on several dozen videos relevant to genetic services.
MSRGSNet: The Mountain States Regional Genetic Services Network provides a directory to service providers, an extensive newborn screening practitioners manual, and full text of its educational publications on molecular cytogenetics, teratogens, prenatal diagnosis and more.
SERGG: The SouthEastern Regional Genetics Group includes a directory of services, newsletters discussing topics of current interest, and a cytogenetic database of chromosomal abnormalities reported by regional laboratories.
Resources for Patient information and Family support

Directory of National Genetic Voluntary Organizations includes contact information for member groups of the Alliance of Genetic Support Groups. Organizations with and without websites may be located here.

Family Village: A comprehensive, continually updated patient-family resource for information and links to national association support groups, listservs, and other families with rare conditions. Funded in part by the Kennedy Institute.
Family Village Card Catalog of Specific Diagnoses

NORD Home Page: The National Organization for Rare Diseases is an important resource for advocacy as well as inexpensive, substantive information resources.
NORD - Medical Updates and Action
NORD - Search their Rare Disease Database:

MUMS: Matches families with identified chromosome abnormalities. Check for a specific chromosome abnormality listed at their site and contact them directly for patient family contact information.

Online Genetic Syndrome Support Groups: This alphabetical index is maintained by a genetic counselor and gives quick access. to national support group associations with websites

Notable Websites for some of the most frequently diagnosed conditions

Cystic Fibrosis Foundation

Down Syndrome WWW

WideSmiles! Cleft Lip and Palate Resource

FRAXA Research Foundation: Fragile X Syndrome