# iAGREE: A Multi-Center, Networked Patient Consent Study

> **NIH NIH R01** · UNIVERSITY OF CALIFORNIA, SAN DIEGO · 2022 · $105,091

## Abstract

Project Summary/Abstract
Biomedical data science innovations rely heavily on multicentric data sharing, and therefore we are developing
a patient platform “iAGREE: A Multi-Center, Networked Patient Consent Study,” supported by the National
Human Genome Research Institute (NHGRI), to facilitate data sharing. However, iAGREE addresses patient-
facing portions of a larger system, which includes “contracts” between the patient and their institution in terms of
authorizing data to be shared with specific parties. We therefore propose in this supplement study to improve
the institution- and researcher-facing processes that are negotiated across institutions in the form of Data Use
Agreements (DUA) and Memoranda of Understanding (MOU). Specifically, we plan to develop/evaluate a data
delivery ledger system in a way that ensures that the EHR and genomic data that are shared in multicentric
studies are consistent, compliant, and delivered as soon as possible. Thus, a system making these documents
computer-executable and human-auditable will greatly enhance the value of iAGREE, making it a more complete
system. We will focus on ethical/legal data delivery documents such as Institutional Review Board (IRB)
approvals, MOUs and DUAs. We will develop an innovative, decentralized system that creates an immutable
record of data sharing transactions, executes agreements across research offices in different institutions, and
permits easy verification of all transactions by authorized users. Our aims include (a) developing a distributed,
community-owned immutable ledger of data delivery, and (b) developing automated data delivery using smart
contracts. This system will make it easier to cross-check data permissions.
This supplementary study can compensate and augment the bioethical capacity of the integrity/reliability within
the scope of our funded parent R01 project. This system can support the development of an evidence base via
new blockchain technology to inform future patient privacy policy directions for clinical/genomic data sharing
across institutions. This system, when successfully developed, can support a broad array of stakeholders in the
field of genomics and healthcare. Moreover, this supplementary study will enable the community to “own” a new
resource that enables scaling up research activities without disproportionally increasing costs, while adhering to
all guidelines, rules and regulations that relate to the ethical and legal implications of research involving
secondary use of clinical data.

## Key facts

- **NIH application ID:** 10594207
- **Project number:** 3R01HG011066-03S1
- **Recipient organization:** UNIVERSITY OF CALIFORNIA, SAN DIEGO
- **Principal Investigator:** LUCILA OHNO-MACHADO
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $105,091
- **Award type:** 3
- **Project period:** 2020-05-01 → 2022-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10594207

## Citation

> US National Institutes of Health, RePORTER application 10594207, iAGREE: A Multi-Center, Networked Patient Consent Study (3R01HG011066-03S1). Retrieved via AI Analytics 2026-06-11 from https://api.ai-analytics.org/grant/nih/10594207. Licensed CC0.

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