CASE-BASED LEARNING RESOURCES:

GeneticTools: Genetics Through A Primary Care Lens **FEATURED SITE!**
Designed to facilitate teaching about genetics in primary care settings, this excellent site provides background information, teaching cases, and links to other teaching resources. It was developed through a HRSA grant and led by a team at the University of Washington.

Case Studies in Science
From the National Center for Case Study Teaching in Science, University at Buffalo, State University of New York, this site contains several genetics-related medical cases for use in the curriculum.

 
Genetics in Clinical Practice: A Team Approach
From the CDC, Dartmouth Medical School Interactive Media Laboratory, and ACMG, educational software program designed to simulate interactions with patients who have, or are at risk of developing, diseases in which knowledge of clinical genetics can affect outcomes. Requires software download to use.
 
Genetics Case Studies for Medical Students
Designed to offer Medical Students at the Uniformed Services University and others an education experience in Medical Genetics using Case Studies.
 
Genetics in Your Practice (March of Dimes)
Online educational program and resource for health professionals. Uses a case based approach. Registration is required.
 
OTHER GENETICS EDUCATION RESOURCES:
AAMC Report VI: Contemporary Issues in Medicine: Genetics Education
Part of the Medical School Objectives Project (MSOP), this June 2004 report lays out learning objectives in genetics for the medical school curriculum.
 
Clinical Genetic Education Resources
Courses and lectures from medical schools around the country.
 
Clinical Genetics: A Self-Study Guide for Health Professionals
Self study guide for health professionals with a minimal genetics background.
 
Genetic Education Materials (GEM) Database
Searchable listing of genetics policy documents and clinical genetics educational materials.
 
Medical School Core Curriculum in Genetics
From the Association of Professors in Human and Medical Genetics and the American Society of Human Genetics, 2001.
 
National Coalition for Health Professional Education in Genetics
Organization of organizations established by the AMA in 1996. Contains among other things, a clearinghouse of educational resources in genetics for health professionals and a core competencies document.
 

Recommended Curriculum Guidelines for Family Medicine Residents: Medical Genetics
American Academy of Family Physicians (AAFP) document, revised 1/04.

 
FAMILY HISTORY TOOLS:
Family History Survey Instrument
Includes a worksheet and pedigree. Developed by Sarah Lawrence College Human Genetics Program and New York Medical College Office of Undergraduate Education and Primary Care.
 
AMA Family History Tools
Tools developed by AMA staff to aid the physician and healthcare provider.
 
My Family Health Portrait (Office of the Surgeon General)
Allows individuals to create a personalized family health history online.
 
TOOLS FOR SOLVING CLINICAL PROBLEMS:
Genes and Disease
Book which provides articles on over 80 genetic diseases associated with specific genes, along with links to national associations and related publications.
 
GeneTests-GeneClinics
A publicly funded medical genetics information resource. A one-time registration process is required. Of particular interest on this site is GeneReviews, providing current disease descriptions with a focus on genetic testing and counseling, and an Illustrated Glossary.
 
Genetic Health
A company that provides Internet-based products and services.The professional health page provides access to daily updates of news articles on genetic health. It also has a link to the "tree-builder" website for making pedigrees.
 
HuGENet
Collaborative system of the CDC intended as a knowledge base related to population-based human genome epidemiology information: literature, prevalence, case studies, and reviews, etc.
 
Online Mendelian Inheritance in Man (OMIM)
OMIM is a catalog of human genes and genetic disorders, with links to literature references, sequence records, maps, and related databases.
 
Online Multiple Congenital Anomaly/Mental Retardation Syndromes (MCA/MR)
(Stanley Jablonski) This freely available online resource has been developed to facilitate the identification and differentiation of syndromes. Note: This database has not been updated since 1999.
 
PubMed
Access to PubMed MEDLINE, and NCBI's Genetics resources.
PubMed Medical Genetics Search Filters
The Medical Genetics Search filters were developed in conjunction with the staff of GeneReviews: Genetic Disease Online Reviews at GeneTests, University of Washington, Seattle.
CLINICAL TRIAL INFORMATION
ClinicalTrials.gov (NLM/NIH)
Searchable database provides regularly updated information about federally and privately supported clinical research in human volunteers .
 
CenterWatch (Thomson)
Clinical trials listing service open to the public.
 
IFPMA Clinical Trials Portal Service
Source of information about ongoing and completed international trials from the International Federation of Pharmaceutical Manufacturers and Associations.
 
CLINICAL PRACTICE GUIDELINES AND POLICY STATEMENTS:
American Academy of Pediatrics (AAP) Committee on Genetics
Policy statements, documents and patient education brochures related to genetics.
 
American College of Medical Genetics (ACMG)
Standards, guidelines and policy statements are available from the College's homepage.
 
American Society of Human Genetics (ASHG)
Policy papers are available online from this homepage.
 
National Guideline Clearinghouse (NGC)
NGC has summary statements and comparison views of guidelines are available from the NGC web site; when available, links are provided to the full-text of the document.
 
OTHER RESOURCES (including some lay resources):
Genetics Home Reference (NLM) **NEW FEATURED SITE!**
Genetics Home Reference provides consumer-friendly information about the effects of genetic variations on human health. With links to several other high-quality lay and professional resources.
 
Ask the Geneticist
Geneticists answer questions about genetic concepts, and the etiology, treatment, research, testing, and predisposition to genetic disorders. Previously posted and answered questions are browsable by disease.
 
Council for Responsible Genetics (CRG)
Pubisher of the magazine GeneWatch, this organization is committed to public debate about the social, ethical, and environmental implicaitons of biotechnology.
 
Directory of Online Genetic Support Groups
An alphabetical list of support groups for different diseases and conditions
 
Genetic Alliance
The Genetic Alliance is an international coalition of individuals, professionals and genetic support organizations that is working together to enhance the lives of everyone impacted by genetic conditions.
 
Genetic Health
Genetic Health is a private company that provides Internet-based products and services. The web site includes information for the lay person about genetic diseases, along with an overview of genetics.
 

Human Genome Project (Dept of Energy)
Completed in 2003, the HGP identified all of the genes in human DNA, and the sequences of base pairs that make up DNA, created databases of information. This site is the project's home base.

 
Kansas University Medical Center, Information for Genetics Professionals
A fairly comprehensive directory of web resources related to all aspects of genetics.
 
March of Dimes 
Resource Center provides accurate and timely information and referral services to the public.
 
MEDLINEPlus
Produced by the National Library of Medicine for lay and professional individuals on general/overviews, clinical trials, diagnoses/symptoms, pictures/diagrams, prevention/screening, research, specific conditions, dictionaries, and organizations.
 
National Center for Biotechnology Information (NCBI)
US national resource for molecular biology information, NCBI creates public databases -- such as PubMed, BLAST, GenBank, OMIM and more.
 
National Human Genome Research Institute (NHGRI)
NORD is a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare diseases and assisting the organizations that serve them.
 
National Organization of Rare Disorders (NORD)
NORD is a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare diseases and assisting the organizations that serve them.
 
National Society of Genetic Counselors (NSGC)
The Society's mission is to promote the genetic counseling profession as an integral part of health care, education, and public policy. The society's position statements are available here.
 
National Taskforce for Newborn Screening and Genetic Resource Center
Information, resources and data related to newborn screening. Of special note: the GEM (Genetics Education Materials) Database .
 
NOAH-Genetic Disorders
NOAH seeks to provide high quality full-text health information for consumers that is accurate, timely, relevant and unbiased. NOAH currently supports English and Spanish.
 
Your Genes, Your Health
A multimedia guide to several genetic disorders. Primarily a patient education resource.
 
Office of Rare Diseases (ORD)
ORD provides information on rare diseases including current research, publications, studies and support groups.
 
Updated 3/2/07, M.Ascher
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