{"doi":"10.1111/cge.14325","title":"Use of a web‐based portal to return normal individual research results in Early Check: Exploring user behaviors and attitudes","abstract":"Early Check is a voluntary, large-scale expanded newborn screening study in North Carolina that uses a self-directed web-based portal for return of normal individual research results (IRR). Little is known about participant perspectives in using web-based portals to receive IRR. This study explored user attitudes and behaviors within the Early Check portal using three methods: (1) a feedback survey available to the consenting parent of participating infants (typically mothers), (2) semi-structured interviews conducted with a subset of parents, and (3) Google Analytics. During an approximate 3-year period, 17 936 newborns received normal IRR and there were 27 812 visits to the portal. Most surveyed parents reported viewing their baby's results (86%, 1410/1639). Parents largely found the portal easy to use to get results, and helpful in understanding the results. However, 10% of parents said it was difficult to find enough information to understand their baby's results. In Early Check, providing normal IRR via the portal made a large-scale study practical, and was highly rated by most users. Return of normal IRR may be particularly amenable to web-based portals, as the consequences to participants from not viewing results are modest, and the interpretation of a normal result is relatively straightforward.","journal":"Clinical Genetics","year":2023,"id":349278,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":10,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.963,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2023-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":1092452,"name":"Beth Lincoln‐Boyea","orcid":"0000-0002-6808-8016","position":1,"is_corresponding":false},{"id":655554,"name":"Angela Gwaltney","orcid":"0000-0002-2305-7187","position":2,"is_corresponding":false},{"id":361052,"name":"Barbara B. Biesecker","orcid":"0000-0001-9665-8963","position":3,"is_corresponding":false},{"id":535530,"name":"Rebecca Moultrie","orcid":"0000-0003-2102-2287","position":4,"is_corresponding":false},{"id":878270,"name":"Amir A. Alexander","orcid":"0000-0002-3141-7381","position":5,"is_corresponding":false},{"id":494114,"name":"Nancy M. P. King","orcid":"0000-0001-9460-7484","position":6,"is_corresponding":false},{"id":695366,"name":"Jennifer Check","orcid":"0000-0002-6340-5334","position":7,"is_corresponding":false},{"id":1092453,"name":"Allyson M. Corbo","orcid":"0000-0002-5862-0216","position":8,"is_corresponding":false},{"id":784952,"name":"Janice Tzeng","orcid":"0000-0003-3915-5811","position":9,"is_corresponding":false},{"id":878268,"name":"Katherine Ackerman Porter","orcid":"0000-0002-5544-8369","position":10,"is_corresponding":false},{"id":452616,"name":"Holly L. Peay","orcid":"0000-0002-3053-7453","position":11,"is_corresponding":false},{"id":308567,"name":"Heidi Cope","orcid":"0000-0003-0586-9277","position":0,"is_corresponding":true}],"reference_count":27,"raw_metadata":null,"created_at":"2026-07-19T01:12:14.919810Z","pmid":"36960544","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}