Acromegaly Patient Focused Drug Development Meeting

Submit Your Comments Early

If you are a person living with acromegaly or a caregiver, you are invited to answer one or more of the following questions. Please provide specific examples to help us understand your feedback.

Discussion Questions

TOPIC 1 – LIVING WITH ACROMEGALY: SYMPTOMS AND DAILY IMPACT

  1. Of all the symptoms of acromegaly, which 1- 3 symptoms have had the most significant impact on you or your child’s life?
    1. Which symptoms most affect you or your child now?
    2. Which symptoms were the most significant at other times in you or your child’s life?
  2. How has acromegaly affected you or your child on best and on worst days?  Describe your best days and your worst days. 
  3. Are there specific activities that are important to you or your child that you or  your child could not do at all or as fully as you would like because of acromegaly? 
    1. How does this affect relationships/friendships with others? 
    2. How does it affect life activities (school/work, abilities, relationships, self sufficiency, living situation, activities, etc.)? 
    3. If you or your child could do one activity that you or your child currently are  unable to, what would it be? 
  4. What worries you most about your acromegaly?  

TOPIC 2 – PERSPECTIVE ON CURRENT AND FUTURE APPROACHES TO TREATMENT  

  1. What are you currently (or recently) doing to manage your acromegaly  symptoms or your child’s symptoms? 
    1. Which specific Acromegaly symptoms do the treatments address? 
    2. How has this treatment regime changed over time and why?  
  2. How well have these treatments treated the most significant symptoms of  acromegaly?  
    1. How well do these treatments improve the ability to do specific activities that  are important in daily life?  
  3. What are the most significant downsides to you or your child’s acromegaly  treatments and how do they affect daily life? (Examples of downsides may include  bothersome side effects, going to the hospital for treatment, etc.)  
  4. Assuming there is no complete cure for your acromegaly, what specific things  would you look for in an ideal treatment for your acromegaly? What factors do you  consider when making decisions about selecting a course of treatment?  

Acromegaly Community wishes to thank the following companies for their support of our Patient Focused Drug Development program.  Working together to improve the lives of patients.  For this we say thank you for helping to make our voices heard.

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Novartis Logo 2018 SQ

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Recordati Rare Diseases

Acromegaly does not define us. We do not let our diagnosis hold us back from living a full and enriched life. Some have found passion, purpose, and inspiration through their diagnosis. These people bring inspiration, and we call this our "Faces of Hope".

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