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FDMAS REGISTRY WORKING GROUP CER SURVEY

QUESTIONS FOR ALL MEMBERS

Question Title

* 1. Please rate the following research study ideas to let us know how important you think it is.

	Not important	Slightly important	Moderately important	Important	Very Important
Do patients who have craniofacial surgery report higher quality of life than patients who do not, and what are the factors that predict higher quality of life for either option?	Do patients who have craniofacial surgery report higher quality of life than patients who do not, and what are the factors that predict higher quality of life for either option? Not important	Do patients who have craniofacial surgery report higher quality of life than patients who do not, and what are the factors that predict higher quality of life for either option? Slightly important	Do patients who have craniofacial surgery report higher quality of life than patients who do not, and what are the factors that predict higher quality of life for either option? Moderately important	Do patients who have craniofacial surgery report higher quality of life than patients who do not, and what are the factors that predict higher quality of life for either option? Important	Do patients who have craniofacial surgery report higher quality of life than patients who do not, and what are the factors that predict higher quality of life for either option? Very Important
Do plates or rods work better in surgically repairing a femur?	Do plates or rods work better in surgically repairing a femur? Not important	Do plates or rods work better in surgically repairing a femur? Slightly important	Do plates or rods work better in surgically repairing a femur? Moderately important	Do plates or rods work better in surgically repairing a femur? Important	Do plates or rods work better in surgically repairing a femur? Very Important
Are narcotics more effective than bisphosphonates or other adjunct therapies for treatment of pain?	Are narcotics more effective than bisphosphonates or other adjunct therapies for treatment of pain? Not important	Are narcotics more effective than bisphosphonates or other adjunct therapies for treatment of pain? Slightly important	Are narcotics more effective than bisphosphonates or other adjunct therapies for treatment of pain? Moderately important	Are narcotics more effective than bisphosphonates or other adjunct therapies for treatment of pain? Important	Are narcotics more effective than bisphosphonates or other adjunct therapies for treatment of pain? Very Important
Do people who exercise or do physical therapy have less pain?	Do people who exercise or do physical therapy have less pain? Not important	Do people who exercise or do physical therapy have less pain? Slightly important	Do people who exercise or do physical therapy have less pain? Moderately important	Do people who exercise or do physical therapy have less pain? Important	Do people who exercise or do physical therapy have less pain? Very Important
In general, do comparable patients who have fewer surgical interventions report higher quality of life?	In general, do comparable patients who have fewer surgical interventions report higher quality of life? Not important	In general, do comparable patients who have fewer surgical interventions report higher quality of life? Slightly important	In general, do comparable patients who have fewer surgical interventions report higher quality of life? Moderately important	In general, do comparable patients who have fewer surgical interventions report higher quality of life? Important	In general, do comparable patients who have fewer surgical interventions report higher quality of life? Very Important

Question Title

* 2. A CER question compares two or more interventions. What are other CER questions that you think could be important to pursue?
This does not have to be detailed. We appreciate any suggestions, ideas, concepts. For example, you could state something like…. “I want to know more about the long-term effects bisphosphonates vs not using bisphosphonates will have on my health when I get older”. We can work to develop an idea like this into a full CER question. If you cannot think of two interventions just state the problem that matters to you most. Example: “When is the best time to do surgery for craniofacial FD”?