HTAD Clinic Survey Please enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Thank you for your interest in our survey! We greatly appreciate you taking the time to complete the survey in an effort to better support individuals living with heritable thoracic aortic disorders. If you would rather complete this survey over the phone, we can be reached via email at lindsay.parsons@loeysdietzcanada.org to schedule a call. Please feel free to reach out over email if you have any questions or comments. Respondent & Clinic InformationRespondent Name *FirstLastRespondent Email *Who is the primary contact at your clinic?FirstLastPrimary Contact EmailClinic Operations & Population Served your Email self-referral How often does your clinic occur?What is the format of visits in your clinic?OnlineIn-personHybridTravellingMobilePlease select all that apply.What age group does your clinic serve?PaediatricAdultBothWhich conditions or disorders does your clinic specialize in?What geographic area does your clinic serve?(e.g., local, regional, provincial, national)Are there any specific populations your clinic focuses on?(e.g., rural communities, Indigenous populations, etc.)Referral ProcessDo patients need to be referred to your clinic by a clinician?YesNoIf yes: How are patients referred to your clinic?(e.g., family physicians, cardiology, geneticists, etc.)If no: What is the process of self-referral or accessing your clinic? Initial EvaluationWhat does the first visit to your clinic usually involve for patients?(e.g. Interviews? Standard imaging/evaluations ordered? Anything that needs to be done prior to visit?)Team ApproachWhich HCPs are involved in the care of patients at your clinic?NursesPhysiciansAllied Health ProfessionalsOtherSelect all that apply.Other:Physician Specialties include:Allied Health Specialities include:(e.g., Physiotherapy, Occupational Therapy, Nutrition, etc.)How do you coordinate care among multiple health care professionals? Please specify if there are care coordinators or nurse navigators to help families navigate the system.What is the referral and coordination process for allied health resources?Is genetic testing offered in your clinic?YesNoIf yes: How is genetic testing integrated into clinic workflow?Do you offer counselling for family members who may also be at risk? YesNoPatient SupportDo you recommend any specific resources?YesNo(e.g., Foundations, Support groups, online tools, communities)CommunicationHow can patients/families contact the clinic with questions about/between appointments?CoverageHow are services covered?PrivatelyPubliclyA combination of Public and Private coverageResearchDoes your institution/clinic conduct research on HTAD?YesNoIf yes: Briefly describe your research program (please include names of tools/registries/databanks used if comfortable).Final wordsWhat should families know about how to access services at your clinic?Is there anything else you would like to share? Follow-upDo you consent to a follow up phone call/email should we require further information?YesNoIf yes: What is the best way to contact you? Thank you for taking the time to complete our survey. Please feel free to reach out to lindsay.parsons@loeysdietzcanada.org with any questions/comments/concerns! Submit
