Search Results
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… The use of human participants in biomedical, clinical and social-behavioral research can provide insights … research with human participants such as that supported by NIH must comply with regulations that protect the rights and … an investigator must provide to each potential research participant a clear summary of the research study, including …
Clinical Research
A study where both genotypic (individual genetics) and phenotypic (individual disease characteristics) patient data would be analyzed using advanced data-analytics programs to derive meaningful associations for the development of prevention, management and treatment strategies.
… Study was launched by a team of NHGRI investigators at the NIH Clinical Center in early 2019. For more information, see … in the clinical study, we highly encourage each study participant to travel to the NIH clinical center annually. …
Clinical Research
The CLINSEQ® Study seeks to learn about the role that your genes play in your health.
… volunteers for the study. Each member of the study has a clinical visit and tests to look at heart health. Study … spend 4 to 5 hours at the National Institutes of Health (NIH) in Bethesda, Md. for your initial visit. The main pieces … staff, call 301-443-6160 or e-mail us at CLINSEQ@mail.nih.gov … In order to prepare for your visit, we will send …
News Release
It’s teatime and doctors, researchers and patients are at the table. They celebrate a decade of work and launch the first in-human gene therapy trial for children with a rare and devastating disease, GM1 gangliosidosis.
… decade of work and launch the first in-human gene therapy trial for children with a rare and devastating disease, GM1 … met Jojo in 2016. Jojo and her mother, Lei, arrived at the NIH Clinical Center with their tea set when they volunteered to …
News Release
Genomic analyses turned up genes that belong to inflammatory pathways.
… of the researchers at the National Institutes of Health (NIH) Clinical Center. … Transformative Research Rohith is just one … examples why the transformative research taking place at NIH is critical. The same cutting-edge clinical medicine that …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… privacy provisions, the National Institutes of Health (NIH) put forth a new policy which requires that all NIH-funded investigators who conduct sensitive, … be issued Certificates of Confidentiality . Previously, NIH issued these certificates only upon researcher request to …
Clinical Research
The Institutional Review Board (IRB)Â is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes.
… Research Institute (NHGRI) is provided by a centralized NIH Institutional Review Board Office (IRBO) located within … of rights, safety and welfare of human subjects, and the NIH’s research mandate. The NIH IRB meets daily to process … An Introduction to Radiation for NIH Research Subjects NIH Clinical Research Studies Active Consent / Assent Documents …
Professional Development Programs
The JHU/NHGRI Genetic Counseling Training Program trains students to conduct research and provides clinical rotations to learn about genetic conditions.
… The JHU/NIH Genetic Counseling Training Program trains students to … research in the field of genetic counseling and provides clinical rotations for students to learn directly about … area. In addition, most students complete rotations at the NIH Clinical Research Center. These experiences are linked to …
News Release
The U.S. National Institutes of Health (NIH) has long invested in basic genetics and genomics research, clinical trials, as well as translational medicine and social science studies, to advance our understanding of this widespread illness to help develop effective therapies.
… the Middle East. … The U.S. National Institutes of Health (NIH) has long invested in basic genetics and genomics research, clinical trials, as well as translational medicine and social … illness to help develop effective therapies. For example: NIH investments in genome sequencing technology have led to …
Clinical Research
This study evaluates patients with inherited metabolic disorders and related medical complications.
… The Clinical and Basic Investigations of Methylmalonic Acidemia … years of age. Be able to travel to and be admitted to the NIH Clinical Center in Bethesda, Maryland for 4 to 5 days … Patients will be excluded if they cannot travel to the NIH because of their medical condition or are less than 2 …