{"doi":"10.1159/000546428","title":"Self-Reported Dystonia and Dystonia on Neurological Examination: Prevalence and Concordance across Time in a Prospectively Followed Essential Tremor Cohort","abstract":"Introduction: Screening questions are important in identifying subgroups of individuals within a target population. Dystonic movements and postures are not uncommon in patients with essential tremor (ET). There is a gap in knowledge - no studies have assessed the validity of a self-report of dystonia in ET patients. We assessed the concordance between self-reported dystonia and the presence or absence of dystonia on examination (DOE). METHODS: We obtained self-report data from 274 ET cases in a serial study with up to five follow-up evaluations. At each assessment, participants could self-report dystonia, and they underwent a detailed neurological examination, from which a movement disorders neurologist assessed for the presence of DOE. RESULTS: Across time, the prevalence of self-reported dystonia and DOE ranged from 0.0% to 4.3% and 8.6% to 17.5%, respectively. There were 74 cases with either self-reported dystonia or DOE; in only 3 (4.1%) was there a positive concordance between the two at each of their evaluations. Values for sensitivity ranged from 0.0% to 40%; specificity from 96.1% to 100%; positive predictive value from 0.0% to 67.0% (median 30.0%); and negative predictive value from 83.1% to 94.4%. CONCLUSION: Our study provides important insights into the validity of self-report data on dystonia in ET and the prevalence of DOE in ET. Our findings suggest that self-reported dystonia was not a valid means to identify DOE in ET. .","journal":"Neuroepidemiology","year":2025,"id":541347,"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":2,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9563,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2025-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":928673,"name":"Diane S. Berry","orcid":"0000-0003-4867-0663","position":1,"is_corresponding":false},{"id":1074957,"name":"Vibhash D. Sharma","orcid":"0000-0001-5543-0305","position":2,"is_corresponding":false},{"id":255401,"name":"Elan D. Louis","orcid":"0000-0003-2062-362X","position":3,"is_corresponding":false},{"id":1413710,"name":"T. Sloane Guy","orcid":"0000-0003-0543-306X","position":0,"is_corresponding":true}],"reference_count":0,"raw_metadata":null,"created_at":"2026-07-19T02:52:47.161928Z","pmid":"40451144","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":[]}