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CAN-ACT Registry Questions Survey

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Based on your lived experience, please rate the following research themes in order of importance:

  • Lifestyle and treatment guidelines
  • Genetic insights and precision medicine
  • Medicine health & psychology

Please rate the following Lifestyle & Treatment Guidelines research topics in order of importance:

  • Transition from pediatric to adult care
  • Physical Activity
  • Standards of practice for diagnostic work-up (What should the standard be for diagnosing a patient with a Connective Tissue/Heritable Aortic Disorder be? What tests should be completed and what information should be gathered?)
  • Medication Initiation (When should a patient begin medication? And, at what dose?)
  • Family Planning (More information about having children when you or your partner has a Connective Tissue/Heritable Aortic Disorder)

Please rate the following Genetic Insights and Precision Medicine research topics in order of importance:

  • Phenotypic Variability (what are the differences from patient to patient when they have the same genetic mutation but different symptoms?)
  • Aortic size pre dissection (looking at the size of an aorta at the time of dissection to better optimize the time of surgery)
  • Drug discovery (finding or developing medication to treat patients with these disorders)
  • Gene discovery (finding the undiscovered genes that cause these disorders)
  • Machine learning (figuring out what we can use this Artificial Intelligence tool for)
  • Predictive Genomics with Artificial Intelligence (using AI/Machine learning to predict disease risk)

Please rate the following Mental Health & Psychology research topics in order of importance:

  • Impact of Diagnosis on mental health and life of patients
  • Psychological support for patients
  • Chronic fatigue/pain felt by patients
  • Mood disorders in patients
  • Bullying of patients and its effects
  • ADHD in patients
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