NIH grant: Pediatric Bone Marrow Failure Network (pBMFN) - Admin Core (1U54HD123051-01)

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NIH grant 1U54HD123051-01: Pediatric Bone Marrow Failure Network (pBMFN) - Admin Core
Institute: {'code': 'HD', 'abbreviation': 'NICHD', 'name': 'Eunice Kennedy Shriver National Institute of Child Health and Human Development', 'admin_org_id': '12500030', 'admin_funding_url': ''}. PI: Akiko  Shimamura. Award: $496921.
Start: 2026-08-21T00:00:00.
Project Summary / Abstract – Administrative core
The Pediatric Bone Marrow Failure Network (pBMFN) is a partnership between the North American Pediatric
Aplastic Anemia Consortium (NAPAAC) and the Rare Diseases Clinical Research Network (RDCRN) formed
with the goals of developing optimal approaches to clinical care, promoting career development, developing
resources for the clinical, research, and patient communities, and fostering clinical trial readiness for children
with BMF. The complexity of coordinating the multiple pBMFN projects and cores integrated with the RDCRN
Data Management and Coordinating Center (DMCC) and patient advocacy groups, and supporting the
participating study sites requires a well organized administrative structure. With the objective of coordinating
and supporting the activities of the pBMFN, the Administrative Core of the pBMFN, headquartered at Boston
Children’s Hospital, has been organized to fulfill the following responsibilities: 1) provide overall administration
for the pBMFN including scientific conduct, policies, procedures, and fund allocation, 2) coordinate activities and
communications between the pBMFN, the RDCRN, RDCRN DMCC, NAPAAC and Patient Advocacy Group, 3)
coordinate and supervise activities of the pBMFN study sites, 4) provide biostatistical support in partnership with
the RDCRC DMCC for pBMFN research, 5) provide data informatics support in partnership with the RDCRN
DMCC to ensure best practices for rigorous validated data collection and data monitoring, 6) work with the
RDCRN DMCC and Career Enhancement Core to develop the pBMFN website and communications for outreach
and education including sharing the goals and achievements of the pBMFN, career enhancement opportunities,
and awareness of pBMFN resources, 7)coordinate sample shipments and centrally process, log and bank bio-
samples, 8) participate in RDCRN efforts to synergistically develop resources and methodologies for collection
and sharing of clinical and laboratory data including harmonization of common data elements, 9) develop
infrastructure and procedures to foster clinical trial readiness and participation. The Administrative Core
leverages the robust institutional infrastructure at Boston Children’s Hospital to support regulatory guidance,
biostatistics/bioinformatics support, experienced administrative support, and clinical research support. The
Administrative Core is the central hub facilitating collaboration, coordination, and communications between all
the pBMFN and RDCRN teams and patient advocacy groups, as well as coordinating regular input from the
External Advisory Committee. The impact of the Administrative Core lies in enabling and facilitating successful
attainment of the pBMFN goals to improve diagnosis and treatment for pediatric BMF.

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