# Coordinating Center for the Undiagnosed Disease Network Phase II

> **NIH NIH U01** · HARVARD MEDICAL SCHOOL · 2020 · $3,498,737

## Abstract

PROJECT SUMMARY
In pursuit of a diagnosis, many patients undergo countless tests and procedures in hopes of finding answers.
When these fail to yield diagnoses, patients are left in a state of uncertainty, faced with the possibility of never
knowing the cause of their symptoms. Finding a diagnosis and other patients affected with the same, or similar,
condition can reduce or eliminate this uncertainty and end the diagnostic odyssey. In our current healthcare
system, it can take years before patients with rare conditions and rare presentations of common conditions
receive a diagnosis- an amount of time that many of these patients simply do not have. As the Coordinating
Center for the Undiagnosed Diseases Network (UDN), Harvard Medical School will support the integrated
network of 8-10 clinical sites and multiple core laboratories striving to improve the level of diagnosis and care
for patients with undiagnosed conditions and facilitate research into their etiologies. We will do this by
leveraging our collective expertise and experience in managing multi-site studies, trans-institutional data
sharing, data curation and analysis, bioinformatics, biostatistics, and translational research. In so doing, we will
accomplish five aims: (1) Enhance UDN core operational processes, (2) Develop consensus across the UDN
for evaluation and diagnostic approaches, (3) Follow the UDN participant beyond the diagnostic evaluation, (4)
Expand the transactional and analytical intelligence applied to UDN data, and (5) Integrate a larger set of
scientific and clinical care partners into the UDN.

## Key facts

- **NIH application ID:** 9966011
- **Project number:** 5U01HG007530-07
- **Recipient organization:** HARVARD MEDICAL SCHOOL
- **Principal Investigator:** ISAAC S. KOHANE
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $3,498,737
- **Award type:** 5
- **Project period:** 2013-12-20 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9966011

## Citation

> US National Institutes of Health, RePORTER application 9966011, Coordinating Center for the Undiagnosed Disease Network Phase II (5U01HG007530-07). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9966011. Licensed CC0.

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