• Mental Health in the Pompe Disease Community

    Pompe Alliance, in collaboration with RAM and MyRaredata, is gathering input on the mental health needs of the Pompe community. Results from this survey will be analyzed and used as input to formulate suggestions for the improvement of mental health support for people living with Pompe, their caregivers and loved ones. The information collected in this survey is strictly confidential and will only be used in aggregate for the purposes of understanding the mental health needs of the community.
  • Which of the following best describes you?*
  • What was your biological classification at birth?*
  • What is your current gender?*
  • What is your racial classification? Select ALL that apply*
  • What is your ethnicity? Select ALL that apply.*
  • Which category BEST describes the highest level of education that you have acquired? Select ONE answer*
  • Do you know when you were diagnosed with Pompe Disease?*
  • What terms do you associate with and/or prefer? Select ALL that apply*
  • What are the symptoms that you experience? Select ALL that apply*
  • Have you ever felt suicidal because of your physical health?*
  • Have you used any of the following on a regular basis [check all that apply]?*
  • Have you been diagnosed with a mental health condition by a healthcare professional?*
  • What mental health conditions have you been diagnosed with? Select ALL that apply*
  • When you were diagnosed with pompe disease, was a mental health provider recommended as a part of your care team?*
  • Have you seen or are you currently seeing a mental health therapist?*
  • Date of birth of your loved ones diagnosed with Pompe Disease*
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    2 digit month, 2 digit day, 4 digit year
  • Your date of birth*
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    2 digit month, 2 digit day, 4 digit year
  • What was your biological classification at birth?*
  • What is your current gender?*
  • What is your racial classification? Select ALL that apply*
  • What is your ethnicity? Select ALL that apply.*
  • Which category BEST describes the highest level of education that you have acquired? Select ONE answer*
  • How many loved ones do you care for that have been diagnosed with Pompe Disease?*
  • Year of diagnosis*
  • Year of diagnosis for loved one number 1*
  • Year of diagnosis for loved one number 2*
  • Year of diagnosis for loved one number 3*
  • Year of diagnosis for loved one number 4*
  • What are the symptoms that your loved one diagnosed with Pompe disease experience? Select ALL that apply*
  • What is your relationship to your loved one diagnosed with Pompe disease?*
  • Have you ever felt suicidal?*
  • Have you used any of the following on a regular basis? Select ALL that apply*
  • Have you been diagnosed with mental health conditions?*
  • What mental health conditions have you been diagnosed with? Select ALL that apply*
  • When your loved ones were diagnosed, was a mental health provider recommended as a part of their care team?*
  • Have you seen or are you currently seeing a mental health therapist?*
  • Are you interested in being contacted to participate in future research related to Pompe Disease?*
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