From paper to pixels: The MDS eCOA Committee's quiet but essential work 

---

Behind every clinical trial, every patient’s registry entry, and every patient assessment in movement disorders research, there is a clinical outcome assessment (COA) — and behind every COA, there is careful, often invisible work to ensure it remains accurate, consistent, and trustworthy.  

This is precisely the mission of the MDS Electronic Clinical Outcome Assessment (eCOA) Committee: to review every electronic version of the MDS-owned scales used in research settings,  

ensuring that each digitalized tool preserves the clinimetric properties of the original. It is quiet work. But it matters enormously.  

That commitment to quality is now expanding into a new frontier — and the MDS eCOA Committee is thrilled to announce that MDS Clinical Outcome Assessments (MDS COAs) are now officially available in REDCap format, with full details published at https://doi.org/10.1002/mds.70224. It is a fundamental step towards making data collection for our movement disorders community easier, more harmonized, and more user-friendly. 

REDCap (Research Electronic Data Capture) is a secure web-based platform widely used in academic and clinical research to administer electronic assessments and manage study data. For the movement disorders community, it offers a meaningful opportunity: the ability to administer validated MDS COAs digitally. This digitalization aims to reduce reliance on paper-and-pencil formats and open new possibilities for remote and patient-friendly data collection. In this spirit, the eCOA Committee is helping move paper-and-pencil MDS COAs into digital formats, a priority that has only grown in importance in recent years. 

Each build began with an initial draft by a committee member, which was then thoroughly reviewed and tested by additional contributors to ensure accuracy with the original paper-and-pencil version. The idea is that these builds can be used by the MDS community, reducing the need for individual sites to create REDCap builds independently. This initiative aims to minimize the risk of implementation errors, support more harmonized data collection across centers, and reduce administrative burden. 

Currently, 85% of MDS COAs are available in REDCap. Additional COAs are being added to the MDS portfolio and will be available soon; our work is not yet complete.  

Additionally, the next phase of this initiative will focus on developing non-English REDCap builds based on official translations of MDS assessments — an important, deliberate step toward equity and global accessibility. For that, officially approved translated versions of the MDS COAs are currently being developed in Spanish, Swedish and Traditional Chinese, with more languages anticipated as the program grows.  

This effort will rely on the expertise and engagement of our international MDS membership. We warmly invite members interested in this work to contribute to the development and review of translated REDCap builds. Your participation, as a developer or reviewer, will help ensure that these tools remain accurate, accessible, and broadly usable across diverse clinical and research settings worldwide. 

After all, better tools lead to better data, and better data benefits clinicians and patients everywhere. 

For questions about MDS-owned rating scales or to volunteer, reach out to the MDS Secretariat at ratingscales@movementdisorders.org. 

To request permission to use a REDCap version within your research study, submit a COA Permission Request Form. 

Browse all COAs