# Administrative Core for the Porphyrias Consortium

> **NIH NIH U54** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2020 · $1,357,363

## 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 organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** Robert J Desnick
- **Activity code:** U54 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $1,357,363
- **Award type:** 5
- **Project period:** 2009-09-30 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10019516

## Citation

> US National Institutes of Health, RePORTER application 10019516, Administrative Core for the Porphyrias Consortium (5U54DK083909-12). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10019516. Licensed CC0.

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