We have been notified that researchers at the UC Davis Medical School are seeking FSHD patients to volunteer for a study. Read here about why participating in research is so important. Your contribution of time and effort is essential to the successful development of treatments for FSHD. Here is information we received from the study coordinator:
Study title: Kinect UO1: Development of Novel Upper Extremity Outcome Measures Using 3-D Vision Technology The purpose of this study is to develop new outcome measures for patients with muscular dystrophy. These outcome measures will focus on upper arm movement and what we call range of motion or reachable workspace. Ultimately our goal is to develop these new techniques to aid in the development of new therapies and create outcome measures for clinical trials. We would like to see the participant every 6 months for a total of 7 visits. Each visit takes about 1-1.5 hours. We will also compensate $20 for each completed visit. The following procedures will be performed at each visit:
- Height, weight and arm measurements will be taken
- Range of Motion Task on the Kinect system: the participant will sit in front of a motion sensing camera that will track the movement of the arms and will be asked to perform various movements indicated by the clinical evaluator.
- Strength: a strength and flexibility test of the shoulders and elbows using a hand held dynamometer
- Range of motion test: a range of motion will be taken at the arm joints, shoulders, and elbows made by the clinical evaluator with a goniometer (angle measuring tool)
- 9-Hole peg test: This is a timed assessment of hand coordination and dexterity which require moving pegs from one part of the board to another.
- Performance Upper Limb (PUL): the participant will be asked to perform everyday tasks including, but not limited to: picking up coins, turning on a light switch, writing with a pen, and lifting 1 kg to shelf height.
- Questionnaire: a questionnaire regarding daily activities.
- FSHD Evaluation Scale: an evaluation of the arms, legs, face, shoulders, and hips.
The study will take place at UC Davis Medical Center in PM&R Research: 4860 Y Street, Suite 1113 Sacramento, CA 95817. Contact the Research Coordinator Alina Nicorici at 916-734-0968. For more information download the UCDavis_KinectStudy_Flyer.