Autism Longitudinal Data Project and Linking the Boston Birth Cohort and Pregnancy to Early Life Longitudinal Data System and Community-Level Health Databases: A Longitudinal Cohort of Mother-Child Dyads
HRSA administers this grant using funding made available by the Health and Human Services Assistant Secretary for Planning and Evaluation (ASPE) from the Patient Centered Outcom...
Health Resources and Services Administration (HRSA), Department of Health and Human Services.
ACTION:
Notice of supplemental funding to Johns Hopkins University (JHU), a current HRSA awardee for the Autism Longitudinal Data Project.
SUMMARY:
HRSA administers this grant using funding made available by the Health and Human Services Assistant Secretary for Planning and Evaluation (ASPE) from the Patient Centered Outcomes Research Trust Fund (PCORTF) and awarded for this purpose to JHU. ASPE/PCORTF supports this multi-agency data linkage project to build further data capacity. Supplemental funding was previously awarded in fiscal year (FY) 2024 and FY25 to initiate the data linkage and user testing process. This award is a continuation of this work and the final year for this ASPE/PCORTF award. If JHU does not receive this award, it will not have the funds needed to execute the final phase of the data linkage project.
FOR FURTHER INFORMATION CONTACT:
Evva Assing-Murray, Senior Health Scientist, Division of Research, Office of Epidemiology and Research, Maternal and Child Health Bureau, HRSA, at
eassing-murray@hrsa.gov
and 301-594-4113.
SUPPLEMENTARY INFORMATION:
Intended Recipient of the Award:
Johns Hopkins University.
Amount of Non-Competitive Award:
One award for $587,191.
Project Period:
September 1, 2022, to August 31, 2027.
Assistance Listing Number:
93.877.
Award Instrument:
Non-competitive single-source supplement.
Justification:
There is a lack of longitudinal data from birth cohorts in the United States to assess maternal and infant health and inter-generational health from a life course perspective. Through this supplement, the data linkages will generate rich datasets with broad array of data on biological, socio-economic, home and neighborhood environment, behavioral risk and protective factors, health services and expenses across the developmental and life stages. JHU is uniquely qualified to conduct this work because it has:
JHU is currently in the 4th year of its second 5-year award from HRSA and has consistently met its goals and objectives.
Led and managed the Boston Birth Cohort since its inception in 1998. As such, is experienced in the complexities of data sharing across institutions and technical aspects of linking data.
Access to these restricted datasets. The Boston Birth Cohort is a restricted use data resource that contains personally identifiable, confidential data, the disclosure of which is protected by law. JHU and its clinical site, Boston Medical Center, maintain these data and are the only entities that currently have access to the datasets required for this activity.
This data linkage project will run from July 2024 to July 2027. This is a continuation of an ongoing activity that was initially funded in FY24 by ASPE/PCORTF to the same intended recipient. Not making the award would preclude the successful implementation of the data linkage project by JHU.
Use this for formal legal and research references to the published document.
91 FR 61850
Web Citation
Suggested Web Citation
Use this when citing the archival web version of the document.
“Autism Longitudinal Data Project and Linking the Boston Birth Cohort and Pregnancy to Early Life Longitudinal Data System and Community-Level Health Databases: A Longitudinal Cohort of Mother-Child Dyads,” thefederalregister.org (September 30, 2026), https://thefederalregister.org/documents/2026-19936/autism-longitudinal-data-project-and-linking-the-boston-birth-cohort-and-pregnancy-to-early-life-longitudinal-data-syste.
26 U.S.C. 9511(d)(2)(C)