Search Results
Fact Sheet
Today, gene therapy for sickle cell disease is considered experimental and only available to you if you participate in a clinical trial.
… …  Step 1: Referral for participation in a clinical trial  If you are referred to a certain trial, you should … email your comments or questions to DemocratizingEd@mail.nih.gov . These educational materials are for informational …
News Release
A new phase of the IGNITE Network will conduct clinical trials of genomic medicine interventions.
… Ph.D. … A new phase of the IGNITE Network will conduct clinical trials of genomic medicine interventions. … The … of funds. The trials will begin in 2020. The first trial will examine whether early access to patients’ genomic … NHGRI is one of the 27 institutes and centers at the NIH, an agency of the Department of Health and Human …
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.
… are seriously ill may overestimate the benefits of early clinical trials while underestimating the risks. This makes … influence a person’s decision to participate in a clinical trial. “Designing clinical trials for curative genetic … Bonham said.  … Additional Resources … About NHGRI and NIH … As genome-editing trials become more common, informed …
Research Funding
The IGNITE PTN supports a network of multi-site clinical groups involving diverse settings and populations to conduct two pragmatic clinical trials of genomic medicine interventions.
… develop methods for incorporating genomic information into clinical care and explore the methods for effective … implementation, diffusion, and sustainability in diverse clinical settings. The first phase of the network, IGNITE I … each applicant to submit a proposed pragmatic clinical trial that would be evaluated in review and selected by an …
Research Training
The Clinical Center Genomics Opportunity promotes precision medicine and development of infrastructure to support clinical genomics at the NIH Clinical Center.
… The Clinical Center Genomics Opportunity promotes precision … of infrastructure to support clinical genomics in the NIH Clinical Center. … The program provides an exciting … opportunity for the Institutes that participate in the NIH Clinical Center to develop capabilities within their …
Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact information is also included.
… of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact … arise as genetic and genomic research are integrated into clinical medicine and healthcare in a variety of settings.  … knowledge and perception; reimbursement; and clinical trial access.  Studies evaluating the ethical, legal, and/or …
News Release
NIH is awarding $18.9 million towards research that aims to accelerate the use of genome sequencing in clinical care for all individuals.
… Sheena Faherty, Ph.D. … The National Institutes of Health (NIH) is awarding $18.9 million towards research that aims to accelerate the use of genome sequencing in clinical care. The new awards will generate innovative … and the National Cancer Institute (NCI), both part of NIH. The new grants will support the development of methods …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… support scientific exploration of the genome and to help NIH in its mission to understand, prevent, detect and better … some care as part of your participation. To receive clinical care, you should consult your regular physician. How … world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone …
Clinical Research
FAQs for participants in the Autoinflammatory Diseases Study.
… look like? We tailor study activities to meet clinical needs and a patient’s ability to participate, so each participant’s experience with the study will look a bit … may need to travel to the National Institute’s of Health (NIH) Clinical Center for a more detailed clinical evaluation. …
For Patients and Families
​Clinical research is research conducted with human subjects, or material of human origin, in which the researcher directly interacts with human subjects.
… Clinical research is research conducted with human subjects, … dosages; and sets the length of the study. … A clinical trial is a research study in which one or more human subjects … etc.) and explains the individual's rights as a research participant. This document is part of an informed consent …