An i2b2-based, generalizable, open source, self-scaling chronic disease registry.
OBJECTIVE
Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software.


METHODS
Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions.


RESULTS
The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA.


CONCLUSIONS
We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing.


CONCLUSIONS
The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases.
Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, MA 02115, USA. marc.natter@childrens.harvard.edu
Marc D
MD
Natter
Justin
J
Quan
David M
DM
Ortiz
Athos
A
Bousvaros
Norman T
NT
Ilowite
Christi J
CJ
Inman
Keith
K
Marsolo
Andrew J
AJ
McMurry
Christy I
CI
Sandborg
Laura E
LE
Schanberg
Carol A
CA
Wallace
Robert W
RW
Warren
Griffin M
GM
Weber
Kenneth D
KD
Mandl
D001171:Arthritis, Juvenile / Q000453:epidemiology; D035843:Biomedical Research / Q000458:organization & administration; D002648:Child; D002908:Chronic Disease / Q000453:epidemiology*; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000453:epidemiology; D033181:Information Dissemination; D016247:Information Storage and Retrieval; D007256:Information Systems / Q000458:organization & administration*; D020407:Internet; D012042:Registries / Q000706:statistics & numerical data*; D012985:Software Design; D014481:United States / Q000453:epidemiology; D014584:User-Computer Interface