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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 …
Research Funding
The Genome Technology Program is refining current technologies to increase efficiency and decrease cost while maintaining or improving data quality.
… The Genome Technology (GTP) program at NHGRI supports research to … resources to share with the community, and disseminates information about program advances. More information about the coordination efforts and currently …
News Release
NHGRI awards $6.7 million in new research grants to develop DNA sequencing technologies that are more sensitive, faster, cheaper and more accurate.
… of ideas that are just crazy enough to work. We now have technology that uses light emitted from glowing molecules to … in an investment that began in 2004 through the Genome Technology Program. "Direct RNA sequencing is one of the … a broad swath of biomedical and biological research." The information stored in our DNA is converted into RNA …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… will support research that incorporates DNA sequence information into electronic medical records. The goal of … she said, and ways in which doctors might use this information to improve clinical treatment and practice. These … and the effects on healthcare systems, in using this information. The following research groups have been awarded …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… one million volunteer participants whose genetic information will be studied to help advance understanding … important that we provide participants with clear information about the issues relevant to genomic research … privacy and confidentiality. It also includes examples and information to guide researchers through the complex consent …
Fact Sheet
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 …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… research and the increasing availability of genomic information. The awards will fund researchers at … program. … The projects will examine the use of genomic information in the prevention and treatment of infectious … and tackle subjects at the interface of ever-changing technology and medicine." The grants, totaling approximately …
For Patients and Families
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 …
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… remain about ethical, legal and social implications of the technology. People who are seriously ill may overestimate the … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research …
About NHGRI
Information about how the NHGRI receives its funding and decides how to spend its annual budget.
… other organisms; ongoing research in genetic science and technology; and a broad program that explores the ethical, … creation of policy recommendations on the use of genetic information. The NHGRI budget provides funding for a dynamic … of the institute. Visit our  Budget and Financial Information FAQ  for more information about how NHGRI is …