Request for Information (RFI): Research Questions to Inform Development of Potential NIDCD Mission Specific Ancillary Collaborations with the All of Us Research Program
Notice Number:
NOT-DC-23-012

Key Dates

Release Date:

May 11, 2023

Response Date:
June 30, 2023

Related Announcements

None

Issued by

National Institute on Deafness and Other Communication Disorders (NIDCD)

Purpose

This Request for Information (RFI) seeks input on additional data collection needs, in NIDCD specific mission areas (hearing, balance, taste, smell, voice, speech and language), ancillary to the All of Us (AoU) Research Program Protocol. The information provided will help NIDCD identify key data collection priorities to suggest to AoU as they plan for future versions of their protocol.

Background

The objective of the AoU Research Program is to assemble a diverse cohort of individuals for an observational design research resource that provides the information needed to address a wide range of scientific questions. The AoU resource facilitates the investigation of biological, clinical, social, and environmental determinants of health and disease. The program will eventually collect and curate health-related data and biospecimens from one million or more individuals across the lifespan; adults and children. Currently, only adult data and biospecimens are available.These data and biospecimens are being made available for research use. The program has a special focus on communities that have been underrepresented in health research previously. Participants are from different races, ethnicities, and age groups. They are diverse in gender identity, sexual orientation, socioeconomic status, educational attainment, and health and disability status. Participants live in all parts of the United States (see map).

Overview - AoU Research Program Data Types

As you respond to this RFI, please review and consider those data that are currently available on the data platform, the All of Us Researcher Workbench. Data are available to researchers in several access tiers. You can refer to the data dictionary for details and use the All of Us Data Browser to explore publicly available, aggregate data and view outcomes of interest. Within the secured, cloud-based Researcher Workbench, researchers can make associations through the integrated dataset by cross-referencing data from these different data types:

  • AoU survey modules can be viewed here. Survey data are currently available for 372,000+ participants.
  • Whole genome sequencing data are currently available for nearly 250,000 participants and genotyping arrays for over 165,000+.
  • Electronic Health Record (EHR) data are currently available from 258,000+ participants, including a wide range of visit types, disease conditions, drug exposures, procedures, labs, and measurements.
  • Physical measurement data are available for 306,000+ participants including height, weight, mean waist circumference, mean hip circumference, mean heart rate, mean blood pressure, wheelchair use, and pregnancy status at the time of the physical exam.
  • Fitbit data are available for 12,800+ participants including heart rate and physical activity.

All of Us Research Program Data Access, Privacy, and Security

You are encouraged to review publicly available AoU Research Program policies and principles in preparing a response to this RFI. These can be found at the following webpages:

Information Requested

NIDCD requests input on the potential utility of the AoU database for conducting high impact research in our mission areas over the next 2-5 years. This may mean that NIDCD would need to facilitate ancillary studies to collect missing or non-existent data or to retrieve and include existing data for deposit into the AoU database. Please provide your comments, which may include, but are not limited to, the following:

  1. Current data
    • Describe important research questions that can be addressed in NIDCD’s mission areas using the data currently available in the Researcher Workbench.
    • How can NIDCD best facilitate these opportunities?
  2. New data
    • Identify important research questions in NIDCD’s 7 mission areas which could be addressed by expanding the AoU database. Please describe what you would need in order to address these questions.
    • What are the data requirements needed to pursue each research question? For example, are any of the following needed: assays of existing biospecimens, collection and analysis of additional samples, re-contacting participants (e.g., survey, physical measures), or data linkages?

How to Respond

All responses must be submitted online by June 30, 2023, by email to NIDCDAoURFI@nidcd.nih.gov . This RFI is for information and planning purposes only and shall not be construed as a solicitation, grant, or cooperative agreement, or as an obligation on the part of the NIDCD to provide support for any ideas identified in response to it.

The NIDCD will use the information submitted in response to this RFI at its discretion and will not provide comments to any responder’s submission. No proprietary, classified, confidential or sensitive information should be included in your response. Respondent names and email addresses will be removed to anonymize submissions. Anonymized responses may be shared with NIH staff, the NDCD Advisory Council and/or other scientific expert groups convened by NIDCD.

Inquiries

Please direct all inquiries to:

Bracie Watson, PhD
National Institute on Deafness and Other Communication Disorders
Email: watsonb@nidcd.nih.gov