Administrative Core for the Porphyrias Consortium

NIH RePORTER · NIH · U54 · $1,357,363 · view on reporter.nih.gov ↗

Abstract

PORPHYRIAS CONSORTIUM ADMINISTRATIVE CORE ABSTRACT The major objective of the Administrative Core of the Porphyrias Consortium (PC), designated the PC Steering Committee (PCSC) is to expedite the development and exploration of new knowledge to improve the diagnosis and treatment of patients with the hepatic and erythropoietic porphyrias. The PCSC will continue to be responsible for the overall operations of the PC including policy, procedure, and fund allocation. Specifically, the PCSC will continue to be responsible for the overall direction, selection, and evaluation of projects and pilot/demonstration projects, coordination of site activities, trainee programs, and finances of the Consortium. These activities will be the responsibility of the PI at ISMMS, together with the Administrative Coordinator at UoU and the PCSC, which is composed of the PI, the Administrative Coordinator, Associate Administrative Coordinator (who is also the Clinical Team Liaison), the senior and key investigators of the other four sites (UTMB, UCSF, WF, and UAB), and the Co-Executive Directors of the American Porphyria Foundation (APF), Mrs. Desiree Lyon Howe and Mrs. Kristen Wheeden. In addition, the ex-officio (non-voting) members of the PCSC include Dr. Inga Peter, our senior expert genetic epidemiologist and biostatistician, and Mrs. Jessica Overbey our biostatistician with experience in clinical trial design. The ex-officio members attend our conference calls and face-to-face quarterly meetings, and provide valued input into the Steering Committee deliberations. The PCSC will continue to meet face-to-face quarterly at the NIH with our NIH/NIDDK and ORD Advisors, and will continue to have monthly telephone conferences, which include the Data and Management Coordinator Center, to review program progress, solve problems arising, and plan new protocols, revisions or projects.

Key facts

NIH application ID
10019516
Project number
5U54DK083909-12
Recipient
ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
Principal Investigator
Robert J Desnick
Activity code
U54
Funding institute
NIH
Fiscal year
2020
Award amount
$1,357,363
Award type
5
Project period
2009-09-30 → 2024-06-30