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000258692 1001_ $$0P:(DE-2719)2810314$$aKlockgether, Thomas$$b0$$eFirst author
000258692 245__ $$aConsensus Recommendations for Clinical Outcome Assessments and Registry Development in Ataxias: Ataxia Global Initiative (AGI) Working Group Expert Guidance.
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000258692 520__ $$aTo accelerate and facilitate clinical trials, the Ataxia Global Initiative (AGI) was established as a worldwide research platform for trial readiness in ataxias. One of AGI's major goals is the harmonization and standardization of outcome assessments. Clinical outcome assessments (COAs) that describe or reflect how a patient feels or functions are indispensable for clinical trials, but similarly important for observational studies and in routine patient care. The AGI working group on COAs has defined a set of data including a graded catalog of COAs that are recommended as a standard for future assessment and sharing of clinical data and joint clinical studies. Two datasets were defined: a mandatory dataset (minimal dataset) that can ideally be obtained during a routine clinical consultation and a more demanding extended dataset that is useful for research purposes. In the future, the currently most widely used clinician-reported outcome measure (ClinRO) in ataxia, the scale for the assessment and rating of ataxia (SARA), should be developed into a generally accepted instrument that can be used in upcoming clinical trials. Furthermore, there is an urgent need (i) to obtain more data on ataxia-specific, patient-reported outcome measures (PROs), (ii) to demonstrate and optimize sensitivity to change of many COAs, and (iii) to establish methods and evidence of anchoring change in COAs in patient meaningfulness, e.g., by determining patient-derived minimally meaningful thresholds of change.
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000258692 650_7 $$2Other$$aActivities of daily living (ADL)
000258692 650_7 $$2Other$$aAtaxia
000258692 650_7 $$2Other$$aClinical outcome assessment (COA)
000258692 650_7 $$2Other$$aScale for the assessment and rating of ataxia (SARA)
000258692 650_7 $$2Other$$aStandardization
000258692 650_2 $$2MeSH$$aHumans
000258692 650_2 $$2MeSH$$aAtaxia: therapy
000258692 650_2 $$2MeSH$$aAtaxia: diagnosis
000258692 650_2 $$2MeSH$$aOutcome Assessment, Health Care: standards
000258692 650_2 $$2MeSH$$aOutcome Assessment, Health Care: methods
000258692 650_2 $$2MeSH$$aRegistries: standards
000258692 650_2 $$2MeSH$$aConsensus
000258692 650_2 $$2MeSH$$aClinical Trials as Topic: standards
000258692 650_2 $$2MeSH$$aClinical Trials as Topic: methods
000258692 7001_ $$0P:(DE-2719)2811275$$aSynofzik, Matthis$$b1$$eLast author
000258692 7001_ $$aCOAs, AGI working group on$$b2
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