Research CP Dystonia Edition Uncertainties

Instructions

In the box below describe what you feel to be unanswered questions or problems about your experience with dystonia in cerebral palsy. During our brainstorming and voting process we will be referring to these questions as “uncertainties”. Uncertainties occur when questions about cause, diagnosis, treatment or outcome cannot be answered by the latest research evidence. If you have a question about, or are uncertain about any aspect of the cause, diagnosis, treatment or outcome of dystonia in CP, and you think these questions need to be answered by research, we want to know about it. You do not need to know whether the evidence exists to submit your uncertainty. We will determine that later.

We are most interested in issues which you have encountered during discussions or consultations between medical staff/therapists and patients or, questions caregivers have about caring for individuals with dystonia in CP. In other words, we want to have a list of your questions and uncertainties which are immediately relevant and critical to understanding how to treat and/or care for someone with dystonia in CP. If you are unsure about whether your question fits into the context of our process you may include it for further review by our study team.