New Jersey Institute of Technology, in conjunction with Talem Technologies, LLC, are seeking 29 non-ambulatory individuals with Duchenne muscular dystrophy for an exciting research study funded by Parent Project Muscular Dystrophy (PPMD). Participants will test and evaluate a novel arm support intended to increase independence in activities of daily living. The arm support received by participants in this study will be commercialized by Talem Technologies based on the valuable contribution of time and feedback provided by each participant.
The duration of the study is approximately 2 years. Participants will receive a pair of wheelchair-mountable passive arm supports to be used regularly in activities of daily living in the home and community. Part-way through the study, each participant will receive a modular upgrade to partially motorize their arm support. Participation requires three in-home functional assessments throughout the duration of the study and monthly phone, email, or video conference interviews. If users enrolled in the study fully participate and find the devices useful, they will be able to keep the devices at no cost to them after the end of the study.
The enrollment period will be open for 2 months (January 18, 2016-March 18, 2016), during which time individuals can contact the study coordinators and will be given further information on how to apply. At the end of the enrollment period, all applicants will be assessed for qualification; and, if more individuals qualify than there are spaces available in the study, participants will be selected at random. The final selection of participants is the decision of the grantee (New Jersey Institute of Technology). Applicants will be notified of the status of their application on or around April 18, 2016.
This is a research study that requires participants to devote time and effort into helping researchers properly evaluate a device before it is commercialized. It is important that applicants are committed to integrating the technology into their daily lives and are interested in having a real involvement in the evaluation of the device by providing ongoing user feedback. To be considered for study, individuals must fit the following criteria:
1. Duchenne muscular dystrophy diagnosis
3. Use power wheelchair daily
4. Can abduct dominant shoulder, without bending the elbow, a minimum of 10 degrees without the use of compensatory movements
5. Can forward flex the dominant shoulder, without bending the elbow, a minimum of 10 degrees without the use of compensatory movements
6. When the dominant elbow is supported horizontally against gravity, can perform full elbow flexion and extension in the horizontal plane
7. Can perform tasks #4-6 to a lesser degree while holding a weighted object
8. Willingness to have an arm support mounted on their wheelchair for the duration of the study
9. Willingness to commit to daily use of an arm support for activities of daily living
10. Willingness to participate in ongoing study evaluations: 3 home visits throughout the duration of the study and monthly interviews
1. Can eat and drink without the use of compensatory movements
2. Can abduct the dominant shoulder, without bending the elbow, more than 90 degrees without the use of compensatory movements.
3. Can forward flex the dominant shoulder, without bending the elbow, more than 90 degrees without the use of compensatory movements.
4. Has contractures that significantly limit upper extremity active range of motion
Compensatory movements = use of posture change, weight shift, external support, or the opposite arm to assist in achieving a task.
To apply for the study, please click here, then click on "Apply for the Study". Download and fill out the Assessment packet and Consent form (or Assent and Parental Consent forms if the applicant is under the age of 18). A list of all required materials and instructions for how to submit your application can be found on the first page of the Assessment packet.
Individuals who apply but do not qualify or are not selected for this study will have the opportunity, if interested, to serve in an advisory role for New Jersey Institute of Technology for this and future projects aimed at augmenting upper extremity function for individuals with Duchenne. An advisory committee will be established with the purpose of broadening the inclusion of individuals with Duchenne in the development of robotics and assistive technology.
If you have questions, please contact:
Also, please read PPMD's blog to learn more about the work of NJIT and Talem Technologies.