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Data Sharing Plans
Most funding institutions, including the NIH and NSF, now require a “Data Sharing Plan” or similarly datafocused component in your application. Good news: Prometheus Research IS your data sharing plan!
Prometheus Research provides practical ways for researchers to make better use of their data while
complying with IRBs, funding agencies, and regulations like HIPAA. We’ll provide you with grant text that
complies with NIH and NSF data sharing requirements (such as Suggested Grant Text below), and will help
you budget appropriately for data management in your grants. Email Grants@PrometheusResearch.com
for more information.
Suggested Grant Text
Data Sharing Plan (Human Subjects Research)
The proposed research will include data from approximately [number] research participants being evaluated
for [aims of research]. The final dataset will include [modalities from protocol] data, which we will integrate
using current best practices and tools. Because this research involves human participants, we will be
collecting identifying information. Even though any shared dataset(s) will be stripped of protected health
information (PHI) before release, we believe there remains the possibility of deductive disclosure of
participants with unusual characteristics. Thus, we will make the data and associated documentation
available only to IRB-approved colleagues and collaborators under an agreement that provides for: (1) a
commitment to using the data only for research purposes and not to inappropriately identify any individual
participant; and (2) a commitment to securing the data using appropriate information technology and
practices. Data will be shared with appropriate researchers by providing secure, temporary access to
subsets of data and/or exported datasets housed in our informatics core (below). Access to data will
automatically limited per HIPAA “minimum necessary” guidelines and will automatically expire after a
reasonable period of time.
All data for this research will be stored centrally at [research institution] and managed using staff and tools
from Prometheus Research, LLC. Prometheus will develop and maintain a web-based informatics core for
the project using their RexDB® data management platform, which will be capable of complying with all
HIPAA/HITECH Technical requirements. Additionally, Prometheus staff will provide ad hoc data
management support to the researchers involved in this project, and will develop best practices for securely
sharing research data with our collaborators and with the wider scientific community. Finally, Prometheus
will ensure our project complies with all relevant data distribution agreements and data submission
requirements.
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Data Sharing Plans
About Prometheus
Prometheus Research is [if autism: “the premier data management partner in autism research,” having
supported or collaborated on some of the largest and most ambitious projects in the field. Their tools and
best practices have been used to collect and distribute data from thousands of families, and their expertise
has been instrumental in the creation of emerging research data standards, including the HTSQL™ query
language, the RexDB® informatics platform, and the NDAR Global Unique Identifier (GUID). Prometheus is
a trusted partner to the Simons Foundation, Autism Speaks, the Yale Child Study Center, the Marcus Autism
Center, and other leading research institutions.
About the Research Exchange Database (RexDB®)
The Research Exchange Database (RexDB®) is an extensible, web-native software platform used to help 
researchers securely manage and share data. Unlike most informatics platforms, RexDB® embraces the
continuous flexibility and openness required to support the needs of dynamic scientific collaborations. It’s
also built on top of sustainable open-source components, so research data will never be marooned in a
proprietary format or a closed legacy system. One of these components is Hypertext Structured Query
Language (HTSQL™), a revolutionary data access layer and high-level query language developed by
Prometheus Research. It works by translating HTTP (the language of the Internet) into SQL (the language of
databases), and then returning web-friendly results. Both RexDB® and HTSQL™ will become Prometheussupported open-source projects (released under the GPLv3) in 2012.
Remote Electronic Data Capture
This project requires capturing data from research participants who are unable to be seen at our [lab,
center, institution] for logistical reasons. For these participants, we will employ tools and best practices for
remotely capturing data electronically using secure Web technology. Our data management partner,
Prometheus Research, will configure and deploy their Reusable Online Assessment Delivery System
(ROADS™) to support our protocol. ROADS™ supports both dual entry of research data by project staff and
single entry of source data by participants, with intuitive screens optimized for each user type.
Integration of Multidisciplinary / Heterogeneous Data
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Data Sharing Plans
This project will generate data using multiple modalities, including [all modalities or data types]. Data from
each will be stored centrally in an integrated informatics core designed to accelerate scientific discovery,
simplify data sharing, and ensure data security, persistence, and reusability.
Our data management partner, Prometheus Research, will use the proven RexDB® platform to develop and
deploy the informatics core. The core will directly store all “searchable” data generated by the project (e.g.,
demographic data, behavioral phenotype data, processed genetic and imaging data), as well as inventory
and location data for physical specimens and any “unsearchable” raw output files generated by experiments
(e.g., genetic sequencing, functional imaging). To ensure the core will scale to support new research
endeavors, it will be extensible to support additional data types and protocols at minimal additional cost.
Together, these data will enable us and our collaborators to quickly and accurately survey our project
population through many different prisms, and to dynamically identify cohorts for analysis and/or followup.
Submitting to NDAR (adaptable to other agencies and repositories)
If NDAR contains your data type(s)
Simply change last line of baseline text to read, “... Prometheus will ensure our project complies with all
relevant data distribution agreements and will perform our semiannual NDAR data submissions.”
If NDAR does not contain your data type(s)
When properly cleaned and organized, [data type] is a valuable resource for [type of research] and related
endeavors. Since [data type] is not currently disseminated through NDAR, this project will serve as a model
for effectively cleaning, organizing, and submitting appropriate [raw and/or summary] data from [type of
research] to NDAR. We will collaborate with our data management partner, Prometheus Research, to (1)
define raw and summary variables for consistent storage and comparison of [data type] data; (2) submit
these variable definitions for inclusion in the NDAR data dictionary; and (3) document our processes for
generating and submitting these data to NDAR using steps that are repeatable and reusable by other
researchers.
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