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F25 The functional rating scale 2.0 (FuRST 2.0): from focus groups to focus-HD
  1. MW Roché1,
  2. P Feigenbam1,
  3. RLM Fuller1,
  4. GT Stebbins2,
  5. N Sinha1,
  6. S Sathe1,
  7. C Sampaio1
  1. 1CHDI Foundation/Management, Princeton, NJ USA
  2. 2Rush University Medical Center, Chicago, IL, USA


The Functional Rating Scale 2.0 is a 24-item patient reported outcome designed to assess functional abilities in people with Huntington’s disease (HD). The development of the FuRST 2.0 began with focus groups and Delphi panel discussions and since, has undergone multiple rounds of cognitive pretesting to ensure its instructions, questions, and response options are understandable to and allow people with HD to accurately represent their experiences. To further the development of the FuRST 2.0, CHDI is planning a three-study research program, FOCUS-HD. In study one, FOCUS-Online, people who self-identify as having HD will complete the FuRST 2.0 online. In study two, FOCUS-In Person, participants in Enroll-HD will be given the opportunity to complete the FuRST 2.0 at their Enroll-HD site. Finally, in study three, FOCUS-Longitudinal, Enroll-HD participants in HD-ISS Stages 2 and mild Stage 3 will complete the FuRST 2.0 at nine study visits over three years. Through FOCUS-HD we will establish and cross validate the psychometric properties of the FuRST 2.0 and evaluate its sensitivity for detecting functional changes in HD earlier than traditional measures of function (e.g., UHDRS®’s Total Function Capacity scale) are able to. The FOCUS-HD research program will begin in Q3 of 2022 and projects to continue until 2028. This poster will describe the development of the FuRST 2.0 and the FOCUS-HD plans in detail.

  • Function
  • patient reported outcome
  • assessment
  • psychometrics
  • observational study

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