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For Patients and Families

List of resources to help you find accurate and reliable information on genetic and rare diseases.

… Finding accurate and reliable information on genetic and rare diseases among the millions … users quickly discover, an enormous amount of health information is available online. The material provided is for … or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that …

Fact Sheet

The Informed Consent Process

Informed consent is more than a form; it’s a process. What does it involve?

… careful explanation about how the participant’s genomic information will be used during and after the study, as well … challenging to convey. With advances in genome sequencing technology, increased data sharing and concerns around … that must be met during this process are: providing key information. confirming the participant understands the …

For Patients and Families

Genetic and Rare Diseases Information Center

The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases.

… The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases … The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by the …

Fact Sheet

Why is informed consent required?

Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.

… Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide … must authorize disclosure of individual health information, including individual research results. It is … a specific circumstance, researchers should consider what information is important to convey to ensure respect for …

News Release

New report offers a primer for doctors' use of clinical genome and exome sequencing

A new genome-based technology for demystifying undiagnosed illnesses - even rare childhood diseases - is moving into general medical practice.

… … Sooner than almost anyone expected, a new, genome-based technology for demystifying undiagnosed illnesses - … and career development at sites nationwide. Additional information about NHGRI can be found at www.genome.gov . … and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov . … …

Health

Genomics and Medicine

Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.

… an emerging medical discipline that involves using genomic information about an individual as part of their clinical … to conduct and then analyze, and because disseminating information and educating healthcare workers about a new … Testing, Newborn Screening, Privacy In Genomics, Genomic Technology … Genomic medicine involves using genomic …

15 Ways Genomics Influences Our World

Direct-to-Consumer Genomic Testing

Advances in genomics are helping you access information about your genome from your home.

… Advances in genomics are helping you access information about your genome from your home. … Did you know … read specific places in their DNA and provide them with information about their genome? Advances in genomics since … to consumer" genomic testing. You can even seek genomic information without involving a healthcare provider in …

Fact Sheets

DNA Microarray Technology Fact Sheet

A DNA microarray is a tool used to determine whether the DNA from a particular individual contains a mutation in genes.

… for? … How does a DNA microarray work? … DNA Microarray Technology Fact Sheet … A DNA microarray is a tool used to …

Fact Sheet

Human Genome Project Fact Sheet

A fact sheet detailing how the project began and how it shaped the future of research and technology.

… project’s architects and participants hoped the resulting information would usher in a new era for biomedical research, … the project. In part due to a deliberate focus on technology development, the Human Genome Project ultimately … issues related to the acquisition and use of genomic information. They were especially aware of the potential …

For Patients and Families

Financial Aid for Medical Treatment

A list of resources and information on financial aid for medical treatment.

… are some resources, however, that may help in finding information on financial aid for medical treatment. … Visit these websites frequently for new information as it becomes available. Talk to your state or … or social workers at your local hospital for more information on available resources. The materials provided …