{"id":"W2340478244","doi":"10.14288/1.0135585","title":"Families’ experiences with medical research for pediatric rare diseases : a qualitative ethnographic study of parents and children participating in clinical trials for Duchenne muscular dystrophy (DMD)","year":2014,"lang":"en","type":"article","venue":"cIRcle (University of British Columbia)","topic":"Genomics and Rare Diseases","field":"Biochemistry, Genetics and Molecular Biology","cited_by":4,"is_retracted":false,"has_abstract":true,"ca_institutions":"","funders":"","keywords":"Duchenne muscular dystrophy; Medicine; Clinical trial; Muscular dystrophy; Qualitative research; Ethnography; Pediatrics; Physical therapy; Family medicine; Sociology; Internal medicine","routes":{"ca_aff":false,"ca_fund":false,"ca_venue":false,"about_ca":true,"invisible_to_affiliation_only":true},"retraction":null,"screen":null,"direct_labels":[],"prediction":{"model_version":"metacan-v3-hybrid-931329e0061c","candidate_categories":["metaresearch"],"consensus_categories":[],"category_scores_codex":[0.01364983,0.001089898,0.001268529,0.001624684,0.01782189,0.005384905,0.002459731,0.002921749,0.003471021],"category_scores_gemma":[0.02298406,0.001341559,0.0006592922,0.001510556,0.01452569,0.007160469,0.007351451,0.00613464,0.0004004753],"about_ca_system_candidate":false,"about_ca_system_consensus":false,"about_ca_system_score_codex":0.00809009,"about_ca_system_score_gemma":0.006467389,"about_ca_topic_candidate":false,"about_ca_topic_consensus":false,"about_ca_topic_score_codex":0.03620226,"about_ca_topic_score_gemma":0.04875297,"domain_scores_codex":[0.9846561,0.0119505,0.0003429624,0.0007523295,0.0006321357,0.001666015],"domain_scores_gemma":[0.9773651,0.01738534,0.001450601,0.0004446179,0.001298229,0.002056179],"domain_codex":null,"domain_gemma":"methods","domain_candidate":"methods","domain_consensus":null,"study_design_codex":"qualitative","study_design_gemma":"qualitative","study_design_scores_codex":[0.00001024446,0.00001517708,0.001166418,0.00002987984,0.000002244609,0.0004845035,0.9969547,0.000009908895,0.00009212622,0.0002971096,0.0001977865,0.0007399173],"study_design_scores_gemma":[0.00000116869,0.00001340752,0.0004419284,0.00004713986,0.000001671561,0.0001290975,0.9977131,0.0000118927,0.00003351203,0.00006487785,0.001536744,0.000005492939],"study_design_candidate":"qualitative","study_design_consensus":"qualitative","genre_codex":"empirical","genre_gemma":"empirical","genre_scores_codex":[0.9899293,0.001303345,0.001154686,0.003868158,0.00008207864,0.0001318952,0.0001620102,0.00001649661,0.003351977],"genre_scores_gemma":[0.9951823,0.001379411,0.0006002741,0.001157443,0.00001964487,0.0001971579,0.00006224194,0.00002350782,0.001377934],"genre_candidate":"empirical","genre_consensus":"empirical","teacher_disagreement_score":0.9863502,"threshold_uncertainty_score":0.07218808,"prediction_status":"machine_predicted_unvalidated"},"machine_scores":{"provisional":true,"baseline":true,"maturity_gate_passed":false,"score_opus":0.07091428848520158,"score_gpt":0.3714736920552498,"score_spread":0.3005594035700482,"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."}}