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Tools and Resources for Healthcare Providers

 

 

 

U.S. Surgeon General’s Family History Initiative


The Surgeon General’s Web site features a wealth of information for health care practitioners, including a useful and comprehensive family history “Resource Packet for Health Professionals.”

 

 


 

CDC National Office of Public Health Genomics (NOPHG)


The CDC/NOPHG provides a wealth of useful family health history information and resources for healthcare professionals, and consumers on their Web site, including the following:

 

  • CDC’s Genomic Applications in Practice and Prevention Network (GAPPNet)

    In 2009, the CDC established GAPPNet as a collaborative initiative involving partners from across the public health sector who are working together to realize the promise of genomics in health care and disease prevention. This initiative aims to accelerate and streamline effective and responsible use of validated and useful genomic knowledge and applications (such as genetic tests, technologies and family history) into clinical and public health practice.

 


 

National Coalition for Health Professional Education in Genetics (NCHPEG)


NCHPEG is a group of organizations that have partnered together to coordinate a national effort to educate healthcare professionals and students about human genetics. NCHPEG works to integrate genetics content into the knowledge base of those in the health care field by developing targeted educational programs, as well as information, tools and resources that useful to them in practice.

  • Professional Education Guidelines: “Core Competencies for All Healthcare Professionals” (2007) (PDF) - This document provides basic guidance to a broad range of individuals and groups as they plan educational initiatives in genetics and genetically-based (or personalized) health care practice.
  • Slides: “Medical Family History: Tools for Your Practice” (PPT)

 


 

National Human Genome Research Institute (NHGRI/NIH)

The NHGRI Web site features a number of great resources, tools, and information on family health history for healthcare providers to use in clinical practice, including the following:


 

National Institutes of Health (NIH): GeneTests


NIH experts developed the GeneTests Web site in an effort to establish an online medical genetics information resource for healthcare professionals. The site features information about the use of genetic data, genetic testing and its applications in clinical practice, and it also provides a genetic testing laboratory directory and a genetics clinic directory. In addition, the NIH also created a separate “Genetic Tools” Web site, which includes information ongenetics concepts and skills,teaching cases,and links to other resources to facilitate genetics education and training in primary care settings on the following topics:

 

GeneTests’ Educational Materials for Healthcare Practitioners:

 

 


 

Genetic and Rare Diseases Information Center (GARD)


GARD is a collaborative effort of two agencies of the National Institutes of Health (NIH), the Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help healthcare providers, patients, and families find useful information about genetic conditions and rare diseases. [To contact GARD experts by phone: Call 888-205-2311; M-F, 12pm-6pm EST.]

 


 

National Library of Medicine (NLM): Genetics Home Reference


The Genetics Home Reference Web site is an online guide to understanding genetic conditions that provides information for both healthcare providers and their patients about the effects of genetic variations on human health and disease risk.

 


 

National Library of Medicine (NLM): MedlinePlus


MedlinePlus brings together authoritative information and online resources from NLM, NIH, and other government agencies and health-related organizations. The MedlinePlus “Family Health History” Web page features links to helpful, up-to-date information and resources on this topic for both healthcare professionals and their patients.

 


 

The American Society of Human Genetics (ASHG)    

         

  • Fact Sheet: “Family Health History Fact Sheet” - A step-by-step guide for your patients that describes how they can collect information about their relatives’ health history and draw a family pedigree that will help predict genetic disease risk.
  • ASHG & Genetic Alliance: “Guide to Understanding Genetics” - This guide for healthcare practitioners and consumers covers basic information about genetics concepts and provides in-depth explanations about genetic conditions, newborn screening, family health history, genetic counseling, and the different types of genetic tests and their applications.
  • ASHG Healthcare Provider Guide: “Family History Law: Guidelines for Health Practitioners” - This guide for medical and health professionals highlights the major ethical and legal challenges that must be considered when utilizing family health history and other genetic information in clinical practice. It also provides information and guidelines for practitioners on legal issues such as patient confidentiality, informed consent and genetic discrimination.

 


 

Genetic Alliance      

 

  • Access to Credible Genetics (ATGC) Resources Network - The ATCG Resource Network provides reliable and accurate information about rare genetic disorders for both healthcare providers and families. This online resource is particularly useful as a reference for health professionals seeking quality information that will help them recognize genetic disorders and give appropriate patient care.
  • Healthcare Provider Card - Ask your patients to fill out the first page of this card to document basic information about their family health history, and bring the completed form with them to their appointment. On the second page of the card, there is information for healthcare providers on how to interpret and use family history information to determine disease risk.

 


 

American College of Medical Genetics (ACMG)


The ACMG Web site provides educational resources, tools, and support for professionals in the field of medical genetics. The ACMG Web site also features a “Find a Geneticist” search tool that allows users to search for genetics health care specialists in their local area. The directory can be searched by name, organization, city/state, or zip code.

 


 

American Board of Medical Genetics (ABMG)


The American Board of Medical Genetics certifies individuals and accredits training programs in the field of human genetics.

The ABMG Web site features a “Find a Certified Geneticist” search tool that allows users to search for a certified clinical geneticist in their local area.  

 


 

National Society of Genetic Counselors (NSGC)


The NSGC Web site includes a useful online tool called ResourceLink, which is a searchable database that was developed to assist healthcare providers, patients and consumers locate genetic counseling services in their local area. Genetic counselors can be searched by city, state, counselor's name, institution, and areas of practice or specialization. NSGC also offers the following family health history resources:

  • Book:“The Practical Guide to the Genetic Family History” - This book was written by NSGC genetic counselor Robin Bennett as a guide to help physicians learn how to use and incorporate family health history information as a tool to benefit their patients in clinical practice.

 


 

American Medical Association (AMA)


The “Genetics and Molecular Medicine” section of the AMA Web site contains a wealth of useful information about human genetics research, education, policy, and more. For specific information about family health history and its applications in clinical practice, see the “Family History” section of the AMA Web site; as well as the following useful resources:

 


 

American Academy of Family Physicians (AAFP)


AAFP’s Web site features a comprehensive list of “Genomics Resources for Family Physicians.” The site also includes a list of AAFP’s Recommended Medical

Genetics Curriculum Guidelines for Family Medicine Residents (PDF), in addition to the following helpful resources:  

 


 

American Academy of Pediatrics (AAP)


The AAP Web site features a list of downloadable forms for healthcare professionals (pediatricians, in particular) to use in patient care settings. Some of the sample forms and templates featured on the site include the following:

 


 

American Academy of Physician Assistants (AAPA)


The AAPA Web site features a helpful guide on “How to Take and Interpret a Genetic Family History,” which offers a detailed description on how providers can collect family health history information from their patients, and how to interpret genetic test results.

 


 

March of Dimes: Genetics and Your Practice


The March of Dimes “Genetics and Your Practice” Web site offers information and tools for medical care professionals to assist them with integrating genetics into their clinical practice, including educational content specific to individual practices, free CME credit courses, and patient questionnaire forms such as the following:

 


 

Utah Department of Health: Chronic Disease Genomics Program


The Utah Department of Health offers a free Family Health History Toolkit for the general public. You can download the Family Health History Toolkit (PDF)* and other related materials and resources to help physicians, patients and families collect health history information – on their Web site.
[*NOTE:Healthcare professionals can promote this free resource to patients and their families by displaying the Utah Department of Health’s “Family History Toolkit Promotional Poster” (PDF) in your clinical practice/hospital/medical care center’s waiting room or office.]

 


 

Connecticut Department of Health: Office on Public Health Genomics


The Connecticut Department of Health produced a Family Health History Workbook, Pocket Guide, Poster, and other free educational materials for patients that are suitable for placing in your waiting room, office, or clinic. To order print copies of the family health history pocket guide, poster, or workbook, please send an e-mail to webmaster.dph@po.state.ct.us, or call 860-509-8000. You can also download PDF files of these materials by accessing the links below:

 

 


 

Virginia Department of Health: Genetics & Newborn Screening Program


The VA Department of Health Web site features a section that describes how “Knowing Your Family Health History Could Save Your Life” which includes tips on collecting this type of information, as well as a useful Family Health History Questionnaire Form (PDF) that healthcare providers can give to their patients to help them record their medical history.

 

 

 

 

 

ALSO SEE THE "TOOLS AND RESOURCES FOR FAMILIES" SECTION OF THIS WEB SITE FOR INFORMATION, RESOURCES AND TOOLS TO SHARE WITH YOUR PATIENTS.

 

 
 

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