The NHGRI Office of the Clinical Director manages Clinical Support Services for Genetics and Genomics in a variety of ways. 1. The Office provides extensive administrative support for medical personnel in their performance of clinical research into rare genetic diseases. This included credentialing of health care professionals, support of their state licenses, provision of parking spaces for acute care providers, scheduling of patients and their tests, arranging contracts for clinical testing, and providing reimbursement for travel, outside medical testing, and especially genetic testing. 2. The Office also provides academic support and infrastructure for clinical investigators, including the setting of policies for the Institute, assisting in patient recruitment, handling patient, physician, and Congressional inquiries by phone, FAX, or e-mail, providing advice regarding clinical protocol writing, tracking protocols through the IRB approval system, establishing a Data Safety and Monitoring Board and arranging its meetings twice a year, and creating and maintaining a Statistical Consultation Service for the entire Institute. The Clinical Director also supervises the administrative personnel as well as research nurses and nurse practitioners for the Institute, and schedules ward coverage. The Clinical Director supervises the Bioethics Core and attends IRB meetings. 3. The Office of the Clinical Director advances clinical and translational research in the NHGRI by fostering new initiatives such as the Undiagnosed Diseases Program (in collaboration with the Office of Rare Diseases and the NIH Clinical Center) and the Office of Translational Research (located in the NHGRI Office of the Scientific Director).

Project Start
Project End
Budget Start
Budget End
Support Year
2
Fiscal Year
2009
Total Cost
$7,020,024
Indirect Cost
Name
National Human Genome Research Institute
Department
Type
DUNS #
City
State
Country
Zip Code
O'Brien, Kevin J; Introne, Wendy J; Akal, Orhan et al. (2018) Prolonged treatment with open-label pirfenidone in Hermansky-Pudlak syndrome pulmonary fibrosis. Mol Genet Metab 125:168-173
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Nikpanah, Moozhan; Kim, Lauren; Mirmomen, S Mojdeh et al. (2018) Abdominal involvement in Erdheim-Chester disease (ECD): MRI and CT imaging findings and their association with BRAFV600E mutation. Eur Radiol 28:3751-3759
El-Chemaly, Souheil; Cheung, Foo; Kotliarov, Yuri et al. (2018) The Immunome in Two Inherited Forms of Pulmonary Fibrosis. Front Immunol 9:76
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