{"id":"W3016105827","doi":"10.1186/s13023-020-01358-z","title":"Evaluation of the quality of clinical data collection for a pan-Canadian cohort of children affected by inherited metabolic diseases: lessons learned from the Canadian Inherited Metabolic Diseases Research Network","year":2020,"lang":"en","type":"article","venue":"Orphanet Journal of Rare Diseases","topic":"Genomics and Rare Diseases","field":"Biochemistry, Genetics and Molecular Biology","cited_by":21,"is_retracted":false,"has_abstract":true,"ca_institutions":"Kingston General Hospital; Queen's University; Alberta Children's Hospital; Centre Hospitalier Universitaire de Sherbrooke; McMaster University; McGill University; London Health Sciences Centre; Children's Hospital of Eastern Ontario; University of Manitoba; BC Children's Hospital; University of British Columbia; Hamilton Health Sciences; Izaak Walton Killam Health Centre; Stollery Children's Hospital; Janeway Children's Health and Rehabilitation Centre; University of Alberta; University of Ottawa; Dalhousie University; Ottawa Hospital; Centre Hospitalier Universitaire Sainte-Justine; Bruyère; Hospital for Sick Children; Western University; Memorial University of Newfoundland; University of Toronto; Montreal Children's Hospital; University of Calgary; Health Sciences Centre; SickKids Foundation; Newborn Screening Ontario","funders":"Canadian Institutes of Health Research","keywords":"Data quality; Minimum Data Set; Data collection; Medicine; Psychological intervention; Quality (philosophy); Missing data; Family medicine; Computer science; Operations management; Nursing; Engineering","routes":{"ca_aff":true,"ca_fund":true,"ca_venue":false,"about_ca":true,"invisible_to_affiliation_only":false},"retraction":null,"screen":null,"direct_labels":[],"prediction":{"model_version":"metacan-v3-hybrid-931329e0061c","candidate_categories":["metaresearch"],"consensus_categories":["metaresearch"],"category_scores_codex":[0.4642312,0.001680362,0.002437858,0.009894709,0.01016452,0.01105293,0.01186077,0.001940757,0.00231902],"category_scores_gemma":[0.5702895,0.001557991,0.003287838,0.0198289,0.006865472,0.004059663,0.00961831,0.003931278,0.0003784742],"about_ca_system_candidate":true,"about_ca_system_consensus":true,"about_ca_system_score_codex":0.1402392,"about_ca_system_score_gemma":0.3320081,"about_ca_topic_candidate":true,"about_ca_topic_consensus":false,"about_ca_topic_score_codex":0.9569532,"about_ca_topic_score_gemma":0.9647288,"domain_scores_codex":[0.5337805,0.1846533,0.06597068,0.01956255,0.1840494,0.01198364],"domain_scores_gemma":[0.2476254,0.2027976,0.05102777,0.05733479,0.4196798,0.02153456],"domain_codex":null,"domain_gemma":"methods","domain_candidate":"methods","domain_consensus":null,"study_design_codex":"observational","study_design_gemma":"observational","study_design_scores_codex":[0.001755298,0.0001970167,0.7596195,0.006506037,0.002340487,0.0002234305,0.02602756,0.003615829,0.0007831342,0.007581047,0.0493636,0.141987],"study_design_scores_gemma":[0.0004004019,0.0005383462,0.9055703,0.008568126,0.0008371589,0.0001604386,0.008264543,0.006960226,0.00136243,0.001847447,0.06508525,0.0004053097],"study_design_candidate":"observational","study_design_consensus":"observational","genre_codex":"empirical","genre_gemma":"empirical","genre_scores_codex":[0.469504,0.03332519,0.1192267,0.1862347,0.003582448,0.03462323,0.1047456,0.001984236,0.04677395],"genre_scores_gemma":[0.755136,0.006403034,0.1809934,0.009725091,0.0005193233,0.01455243,0.03033593,0.0005746269,0.001760097],"genre_candidate":"empirical","genre_consensus":"empirical","teacher_disagreement_score":0.9569532,"threshold_uncertainty_score":0.9972007,"prediction_status":"machine_predicted_unvalidated"},"machine_scores":{"provisional":true,"baseline":true,"maturity_gate_passed":false,"score_opus":0.1748213141279013,"score_gpt":0.418855920911327,"score_spread":0.2440346067834256,"validation_status":"score_only:v0-immature-baseline","note":"Baseline scores from an immature model (maturity gate not passed). Scores rank; they never assert a category."}}