# 2021 State of the Science Research Summit

> **NIH NIH R13** · NATIONAL BLEEDING DISORDERS FOUNDATION · 2021 · $10,000

## Abstract

Project Summary/Abstract
 The National Hemophilia Foundation (NHF) has over 70 years of experience advocating for persons
with multiple inherited bleeding disorders (IBD). As the needs of IBD patients evolve in relation to both
advancements in diagnostics and treatment options, and an increasingly diverse population (e.g. ethnicity/race,
age, gender/sex), a comprehensive approach to identifying gaps and concerns will ensure patient access to
optimal care. For example, pursuits in IBD biomedical research often prioritize one bleeding disorder over
another and eclipse studies into the psychosocial impacts of IBD on patients and caregivers. Though this
method has revolutionized medical care for some, it fails to consider the needs of the entire community,
especially as the community prepares for gene therapy and its first-ever generation of aging patients. Among
the enormity of these developments, the patient voice can be lost, and researchers too often rely on their own
scientific expertise rather than patient input to determine IBD community outcomes, resulting in misused time
and funding.
 To respond to these monumental shifts within the IBD community, stakeholders must coalesce around
patients. As such, in the second quarter of 2021 (tent. May), NHF will hold the State of the Science Research
Summit, inviting the IBD community to define the next decade of IBD research and patient care. The objective
of this two-day Summit is to dismantle traditional approaches to IBD research by amplifying a diverse patient
perspective, enabling patients to serve as key decision makers in the creation of an aligned, national research
agenda to be adopted by all stakeholders. Specific Summit aims are as follows:
 1. Present an overview of traditional IBD research as well as the aggregated results of pre-
 Conference stakeholder initiatives
 2. Utilize breakout working groups to identify, define, and prioritize research priorities (4-6) among
 conference attendees
 3. Determine and assign roles to all stakeholders as they relate to the newly established agenda
 Mirroring the mission of the NHLBI, this Summit will improve upon the health and quality of life of those
diagnosed with IBD by centering on the needs of the patient population as the community’s foremost
consideration. In addition to the IBD patient-centric agenda, the Summit will allow for the creation of a
template that other rare disease organizations may use to develop their own patient-centric and disease-
specific conferences and agendas.

## Key facts

- **NIH application ID:** 10237473
- **Project number:** 1R13HL158209-01
- **Recipient organization:** NATIONAL BLEEDING DISORDERS FOUNDATION
- **Principal Investigator:** Michelle Witkop
- **Activity code:** R13 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $10,000
- **Award type:** 1
- **Project period:** 2021-07-25 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10237473

## Citation

> US National Institutes of Health, RePORTER application 10237473, 2021 State of the Science Research Summit (1R13HL158209-01). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10237473. Licensed CC0.

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