PA Genetics Online Curriculum:
Progress Report from the NCHPEG Working Group
Goldgar, Healy, Wolpert
PAEA Annual Education Forum
October 25- 29, 2006
Québec, Canada
Presenters and Members of NCHPEG Project PA Work Group
Constance Goldgar, M.S., PA-C, University of Utah
Kris Healy, MPH, PA-C, Midwestern University (IL)
Chantelle Wolpert, MBA, PA-C, CGC, Family Research Center
University of North Carolina -- Greensboro
PEARL Objectives
- Discuss the new ARC-PA standard (B2.02), related to” the genetic and molecular
mechanisms of health and disease”;
- Describe the goals and objectives of an on-line genetics education resource
- Discuss resources assembled by NCHPEG to assist the working group;
- Discuss the content being developed and the anticipated modes and time line for
dissemination and delivery to PA faculty, PA students and PA clinicians.
New ARC-PA Standard (B2.02) (effective September 2006)
- requires “instruction in the professional phase of the program [that] must include
instruction in “… the genetic and molecular mechanisms of health and disease”
National Coalition for Health Professional Education in Genetics (NCHPEG)
- Committed to “promote health professional education and access to information about
advances in human genetics” http://www.nchpeg.org/
- Developed Core Competencies in Genetics Essential for All Health Care Professionals
- Diverse coalition of >140 organizations including health professional (both AAPA and
PAEA), consumer and volunteer groups, government agencies, private industry, managed
care organizations, genetics professional societies
- Competitive grants (HRSA) to health professional groups to create on-line genetic curricula
- PA group applied in 2004 and 2005 (Applied under AAPA as a member of NCHPEG)
- PAs and PA faculty members collaborated
PA Curriculum Project Selected!
- Goal: Development of web-based genetic education materials for PAs, PA faculty and PA
students
- $20,000 grant
- NCHPEG’s role:
- Significant access to genetic professionals
- Expertise with web-based and other electronic genetics learning tools
- Genetic resources
- Assemble a PA Work Group and Advisory Committee
PA Project Objectives: As a result of utilizing the proposed NCHPEG and AAPA web-based
genetic education materials, PAs and PA students will be able to:
1. Define basic medical and human genetics terminology. Elicit a three-generation family
history and record it in pedigree format. Locate and utilize commonly available valid family
history tools.
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PA Genetics Online Curriculum:
Progress Report from the NCHPEG Working Group
Goldgar, Healy, Wolpert
PAEA Annual Education Forum
October 25- 29, 2006
Québec, Canada
2. Interpret pedigrees or family history tools to identify patients at risk for diseases that may
have a genetic component.
3. Identify patients and families from pedigree/family history information who may benefit
from genetic services, and understand what is involved in making appropriate referrals for
genetic counseling, genetic testing and screening.
4. Select appropriate management options that range from patient education, preventive
measures (including behavioral and medical), genetic testing, genotyping for pharmacologic
interventions, medical interventions, and referral.
5. Discuss the psychosocial and societal impact of genetic information for individuals, families,
and communities.
6. Recognize the value of non-directive counseling to ensure patient autonomy and patientcentered care.
Site Structure
- Case-based with a step-by-step approach, following what is done in clinical practice,
including
- Elicitation of HPI (including symptoms), family/social/cultural history, physical, and
laboratory findings
- Differential diagnosis development
- Application and incorporation of clinical genetic concepts
What progress?
- Cased-based structure and interactive learning activities
- Cases in development
- Thrombophilia
- Developmental delay
- Heart disease
- Familial cancer
- Supported by the NCHPEG web-site
Timeline
- Pilot Testing of Web site--AAPA Annual Meeting 2007 in Philadelphia
- Beta testing of site--Summer 2007
- Unveiling--PAEA Educational Forum 2007
Genetic Resources
- Resource listing a variety of web-based genetics resources (see pages below)
- Another Resource:
- Rocky (Michael A.) Rackover PA-C, M.S., who is on sabbatical at the NIH until end of
year
- Working at the National Human Genome Research Institute (NHGRI)
- rackoverm@mail.nih.gov
- RackoverM@PHILAU.EDU
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PA Genetics Online Curriculum:
Progress Report from the NCHPEG Working Group
Goldgar, Healy, Wolpert
PAEA Annual Education Forum
October 25- 29, 2006
Québec, Canada
Genetics Resources on the Web for Faculty, Students and Clinicians
CATEGORY
DESCRIPTION
AFFILIATION/
COST
EDUCATIONAL RESOURCES
Basic Genetics
Genetics and Molecular Medicine
http://www.amaassn.org/ama/pub/category/1799.html
Designed to help clinicians stay abreast of genetic
developments. Potpourri of resources, both educational
and clinical.
Free. AMA
sponsored.
This site is customized for those working with the
following patient types: preconception/prenatal,
infant/children, and adolescent/adult. Gives practical
information/resources to assist in integrating genetics
into patient care. Users can earn CME Credits by
completing the interactive case study at the end of each
module.
Free. Requires
registration. March
of Dimes
sponsored.
Supported by a
grant form Robert
Wood Johnson
Foundation.
Current genetic cases on Dementia and Developmental
Delay with post questions and answers. Site indicates
case topics will change.
University of
Vermont College
of Medicine
This web page is designed to provide an educational
experience in Medical Genetics using 12 Case Studies.
A self quiz follows.
Uniformed
Services
University.
Genetics & Your Practice
http://www.marchofdimes.com/gyponline/index.bm2
Genetic cases
http://www.med.uvm.edu/gipc/gcases.shtml
http://cim.usuhs.mil/genetics/cases.html
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PA Genetics Online Curriculum:
Progress Report from the NCHPEG Working Group
Goldgar, Healy, Wolpert
Pedigree-related
American Medical Association—Family History
Tools
http://www.amaassn.org/ama/pub/category/2380.html
PAEA Annual Education Forum
October 25- 29, 2006
Québec, Canada
Free. AMA
sponsored.
Taking a Family History
http://med.usd.edu/som/genetics/curriculum/2BHIST
2.htm
Contains: Prenatal, Pediatric, and Adult Family History
Questionnaires, (PDF downloadable). Also provides
a PDF pocket guide that provides instructions and
examples for patients on how to generate a simple
pedigree.
Instructions and logic behind taking a family history,
Can continue to next section of url: “Patterns of
inheritance: Analyzing a family history.
Pedigree Drawing Programs
Geneology Program
http://www.interpersonaluniverse.net/wware.html
A genealogy program that can be used to draw a
pedigree.
Wonder Ware, Inc.
$39.95 - $114.95
Smart Draw
http://www.smartdraw.com/specials/genealogy.asp?id
=24226
Misbach Enterprises
http://misbach.org/pdfcharts/
A program for drawing organizational charts but can be
used to organize a pedigree.
Free 30-day trial
$198
Has free charts that can be downloaded and printed off.
It also offers a free program that can be used to organize
a pedigree on a web site.
Free. Misbach
Enterprises
PowerPoint
Has chart-drawing capability.
Genetics and Ethics
http://www.genethics.ca/
http://www.ethicsweb.ca
A Canadian site that is part of a large website on ethical
issues. Might be useful for a couple of courses
Free.
Genetic Testing, Discrimination and Privacy
http://www.gene-watch.org/programs/privacy.html
Fosters public debate about the social, ethical and
environmental implications of genetic technologies.
Free. Council for
Responsible
Genetics (CRG)
Univ. South
Dakota
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PA Genetics Online Curriculum:
Progress Report from the NCHPEG Working Group
Goldgar, Healy, Wolpert
Other Genetic Education Resources
National Human Genome Research Institute
http://www.genome.gov/Education/
PAEA Annual Education Forum
October 25- 29, 2006
Québec, Canada
All of these are part of the Human Genome Project
Free.
http://www.ornl.gov/sci/techresources/Human_Geno
me/education/education.shtml
Human Genome Project Educational Resources
http://www.ornl.gov/sci/techresources/Human_Geno
me/links3.shtml
Human Genome Project Information (Links to the
Genetic World)
Genetic Educational Material Data Bank
GEM Database is a searchable listing of public health
genetics policy documents and clinical genetics
educational materials.
Sponsored by the
HRSA, Maternal
and Child Health
Bureau (MCHB).
Gene Tests provides worldwide testing laboratory and
clinic directories, and teaching tools.
GeneReviews, provides current, expert-authored, peerreviewed, disease-specific reviews describing the
application of genetic testing to the diagnosis,
management, and genetic counseling of patients and
families with hereditary disorders.
One-time
registration
process is required.
Free online. NIH
funded
Online Mendelian Inheritance in Man TM (OMIM)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=O
MIM
OMIM is a catalog of human genes and genetic
disorders, with links to literature references, sequence
records, maps, and related databases. Search engine
parallels PubMed Database
Developed by
National Center for
Biotechnology
Information.
Referral for Genetic Services
http://app1.health.state.pa.us/fhc/(q1fv1g5542y4gd45
h2om3e55)/ModuleOutline.aspx
National Society of Genetic Counselors (NSGC)
Online training module for what patient issues may
require genetic referral.
Pennsylvania State
Health
Department, 2001
Sponsored by
http://www.gemdatabase.org/GEMDatabase/index.asp
CLINICIAN RESOURCES
Gene Tests/Gene Reviews
http://www.genetests.org/
http://www.genereviews.org
NSGC website can help locate a genetic counselor in
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PA Genetics Online Curriculum:
Progress Report from the NCHPEG Working Group
Goldgar, Healy, Wolpert
PAEA Annual Education Forum
October 25- 29, 2006
Québec, Canada
http://www.nsgc.org/resourcelink.asp
regional areas with search criteria.
NSGC.
Genetic Health
http://www.genetichealth.com/
Provides consumers and health care providers with
educational information and software tools to help them
understand and assess genetic risk of common diseases
such as: Alzheimer's, Breast Cancer, Colon Cancer,
Diabetes, Heart Disease, Hemochromatosis, and
Ovarian Cancer.
Free online. Nonprofit.
Foundation for Genetic Education and Counseling
(FGEC)
http://www.fgec.org/resources.html
Small site that concentrates on mental illness and the
genetic link (bipolar illness, schizophrenia).
Free. Non-profit
FGEC sponsored.
American Medical Association—Genetics in
Clinical Practice: A Team Approach
http://www.amaassn.org/ama/pub/category/11832.html
This genetics program is intended for health care
providers who have an interest in genetic testing. The
program focuses on simulated patients who are at risk or
have four different diseases (hemochromatosis, cystic
fibrosis, colorectal cancer, and Fragile X Syndrome).
The AMA is
offering a free CDROM. Please
email requests to:
srt@ama-assn.org
National Newborn Screening and Genetics
Resource Center
http://genes-r-us.uthscsa.edu/
This site has information and links about newborn
genetic screening tests.
Free. U of Tx
Health Science
Center (San
Antonio) and
MCHB.
PATIENT/CONSUMER RESOURCES
Genetic Alliance
http://www.geneticalliance.org
An international coalition comprised of > 600 advocacy,
research and healthcare organizations representing
millions of individuals with genetic conditions and their
interests.
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PA Genetics Online Curriculum:
Progress Report from the NCHPEG Working Group
Goldgar, Healy, Wolpert
The University of Utah Genetic Science Learning
Center
http://gslc.genetics.utah.edu/
PAEA Annual Education Forum
October 25- 29, 2006
Québec, Canada
A Web site created to help people understand how
genetics affects their lives and society.
Describes diseases that have a known or suspected
New York Online Access to Health (NOAH)
http://www.noahhealth.org/english/illness/genetic_di genetic origin. Also contains information on basic
seases/geneticdis.html
genetics, genetic disease foundations, and support
resources. Also in Spanish.
Genetics Education Center
http://www.kumc.edu/gec/support/index.html
Description of Genetic Conditions, linking with support
groups, addresses, and other resources.
Genetics Home Reference (NLM site)
http://www.ghr.nlm.nih.gov/
The National Library of Medicine's web site for
consumer information about genetic conditions and the
genes or chromosomes responsible for those conditions.
Mayo Clinic provides information on family history and
Compiling your family medical history
http://www.mayoclinic.com/invoke.cfm?objectid=38 genetic testing plus links for further information for
5FC65E-F961-49BA-99B799A3A0DAF885
patients.
Free online.
University of Utah.
NY Library
Associations, US
Dept. of Commerce,
March of Dimessponsors.
Free. University of
Kansas Medical
Center.
Free. National
Library of
Medicine.
Free. Mayo Clinic.
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