Accessing National ART Surveillance Data
The use of advanced technologies to overcome infertility has increased substantially since the birth of the first US infant conceived with assisted reproductive technology (ART) in 1981. In 2017, ART contributed to nearly 2% of all infants born in the United States. Yet there are gaps in understanding the scope and outcomes of ART treatment, as well as the public health burden of ART treatment for infertility. The National ART Surveillance System (NASS) is a Web-based reporting system that collects information on all ART cycles started in the United States. Data collected in NASS, which includes patient and donor characteristics, ART cycle information, and treatment outcomes, has been used to answer important research questions about ART. To promote further research on ART, CDC, in collaboration with the CDC Foundationexternal icon and with support from Open Philanthropy, has launched a new initiative to facilitate collaborative research using NASS data.
CARTER will establish a consortium of innovative research projects that aim to improve maternal, pregnancy, and infant health outcomes. External researchers are invited to submit proposals for research using NASS data. If approved, CDC statisticians will conduct analyses and provide outputs in tables and figures to support scientific publication.
ART surveillance data are sensitive because they contain personal medical information about both the people undergoing ART and the infants born after ART. These data are protected by the Assurance of Confidentiality under the Public Health Act Section 308(d). Due to these confidentiality restrictions, access to data files is currently limited to CDC staff and approved guest researchers. NASS data cannot be released to external researchers.
Researchers interested in projects using NASS data are invited to submit a research proposal. The proposal process is briefly described below. More detailed information for proposal development, including information on variables available in NASS and the Proposal Form, can be found in the Collaborative for Assisted Reproductive Technology Epidemiologic Research (CARTER): Guide for Researchers pdf icon[PDF – 572 KB].
Overview of the proposal process:
- The Principal Investigator completes and submits an application, which includes the Proposal Form word icon[DOC – 57 KB] and a biographical sketch or C.V. for each investigator, to the CARTER Coordinator via e-mail. The proposal will be screened for completeness, consistency with available data, and potential overlap with ongoing projects. The initial screening will take approximately 2 weeks.
- Proposals that meet the screening criteria will be forwarded to the CARTER Review Committee, which comprises several individuals with extensive knowledge of ART, NASS data, and experience in scientific research. The Review Committee will evaluate the scientific merit, appropriateness of methodology, and public health importance or clinical relevance of the proposed research. This review will take approximately 4 weeks. The Principal Investigator will be informed whether a proposal is rejected, requires major revision, is approved pending minor revisions, or is approved without revision. If the Committee requires revisions (major or minor), the researcher has 4 weeks to submit a revised proposal.
- Once the Review Committee approves the proposal, researchers will be required to complete confidentiality forms and seek IRB approval by CDC or their organizations, if needed.
- Upon receipt of all required confidentiality forms and IRB approval (if needed), CDC staff will conduct approved analyses and provide outputs to the Principal Investigator.
- The Principal Investigator will be asked to provide an update on the status of the project 6 months after analyses are completed. Researchers are highly encouraged to share at least the first draft of the manuscript within this time period. Projects that have not been submitted for publication within 1 year from the completion of analyses will be re-evaluated by the CARTER Review Committee. At that time, the Committee may recommend replacement of authors, or the research topic may be made available to other interested researchers.
For more information, please e-mail ARTinfo@cdc.gov.