Striving to improve outcome measures for inclusion body myositis through novel dynamometer and modifications of the current functional rating scale (4938)

Objective: (1) Determining efficacy of novel dynamometer for finger flexor strength measurement (2) Does addition of NIH-published patient reported outcomes to current IBM-FRS improve ability to detect change Background: Inclusion body myositis (IBM) is a indolent but relentlessly progression myopathy that remains refractory to current modalities of treatment. Limitation of clinical trials for novel therapeutics include insufficient outcome measures to faithfully reflect changes in deep finger flexor strength and upper extremity function. IBM-FRS has some validation data, but our previous work showed that items designed to reflect hand function did so poorly. Stemming from this work we aim to (1) evaluate new patient reported outcome published by the NIH and how well they augment appreciation of deep finger flexor weakness (2) determining the reliability and feasibility of a new pinch dynamometer. Design/Methods: 123 subjects recruited at the national Myositis Conference 2019, including 84 IBM patients and 39 healthy controls. Motor function is measured by grip dynamometer (Jamar), manual distal finger flexor testing, commercial pinch dynamometer (Citec) previously used in assessment of IBM, and novel pinch dynamometer (Piezo). The Piezo dynamometer consist of a light weight, thin, membranous force-sensing resister capable of detecting force applied between 2 surfaces (pinch) up to 100lbs. Our IBM cohort filled out a modified IBM-FRS which included items from patient reported outcomes published by NIH and additional section to free text questions that they feel would be more appropriate when assessing their hand function. Results: Data analysis is ongoing and will be published at the time of the poster Conclusions: This study aims to improve outcome measures by (1) field test NIH patient reported outcomes in a large IBM cohort, (2) comprehensive comparison of 3 different methods of pinch strength evaluation, that is specific to IBM but can be challenging to assess. Disclosure: Dr. Lin has nothing to disclose. Dr. Siener has nothing to disclose. Dr. Seiffert has nothing to disclose. Dr. Weihl has nothing to disclose. Dr. Wang has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Biogen, Argenx.. Dr. Wang holds stock and/or stock options in GWPH, Spark Therapeutics. Dr. Wang has received research support from Fulcrum Therapeutic.