Acromegaly: a quality-of-life improving research project

Discussion in 'Acromegaly / IAA / Cushings Cats' started by AcroCatTeam, Dec 8, 2019.

  1. AcroCatTeam

    AcroCatTeam New Member

    Joined:
    Dec 7, 2019
    Hello everybody!

    I am writing from Italy, precisely from University of Bologna.

    I am part of a group of clinical researcher currently working on feline acromegaly. We would gain as much knowledge as possible about epidemiology and quality of life, with the aim to develop better treatment strategies. Obviously, owners point of view is paramount in this process.

    We have created a questionnaire for acromegalic cat owners. It is currently being translated in many different languages in order to reach as many people as possibile all over the world.

    I attach here the link of the english version of the questionnaire:
    https://docs.google.com/forms/d/e/1...kH8T4NeUKm0X5VFcNLAW_v60w/viewform?usp=pp_url

    Every questionnaire filled is a small step in the fight against this disease.

    Feel free to ask anything you want about our project and to give us any suggestion!

    The AcroCatTeam
     
    jt and trouble (GA) likes this.
  2. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    Some comments.

    You ask about IGF-1 level. The majority of people on this board are from North America, which uses a different measuring system than elsewhere. The blood is sent to Michigan State University for testing. Numbers above 92-100 are considered indicative of acromegaly. The number ranges in your survey are more relevant to testing done elsewhere.

    I didn't notice any questions on quality of life.

    Is your team in touch with the Royal Veterinary College's Diabetic Remission Cilnic?
     
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  3. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Senior Member Moderator

    Joined:
    Dec 28, 2009
    The information you are asking (location, email address) requires that a research study be approved by the Italian equivalent of an Institutional Review Board. The information you have requested is considered personal data which automatically triggers the need for an IRB review in the US. Do you have IRB approval and if so, can you provide your IRB number or letter of approval.
     
  4. AcroCatTeam

    AcroCatTeam New Member

    Joined:
    Dec 7, 2019
    Thank you for your suggestions.

    We will modify question about IGF-1 dosing, specifying the difference in measuring system between Europe and North America.

    Regarding quality of life evaluation, we will consider adding some more specific questions about it.

    We are in touch with RVC Diabetic Remission Clinic headed by Prof. Niessen, who collaborated on this project.
     
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  5. AcroCatTeam

    AcroCatTeam New Member

    Joined:
    Dec 7, 2019
    In our country an Ethics Committee and/or IRB approval is required when the study involve direct intervention on animals (e.g.: blood sampling). In this type of study an Ethics Committee approval is not required. For these reasons we do not have an Ethics Committee approval for this project.

    All personal data (location, email address) are completely optional and, if given, will be used only for the research purpose.
     
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  6. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thank you for answering the questions. Will there be updates to the questions? If so I might wait to answer the newer version. My cat Leo had Acromegaly. He was a very sweet cat.
     
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  7. AcroCatTeam

    AcroCatTeam New Member

    Joined:
    Dec 7, 2019
    We are currently working on an update. I suggest to wait for the new version. I will post it here as soon as it will be ready.
     
  8. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks. I will wait for the update.
     
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  9. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Did you guys ever update the questions in the survey? If so, then I will fill it out for our cat Leo.
     
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  10. AcroCatTeam

    AcroCatTeam New Member

    Joined:
    Dec 7, 2019
    Yes, we updated the survey. You can fill it using the same link in the first post. Thanks for your help.
     
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  11. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    I responded to all the questions, and I hope this helps with your study on Acromegaly.

    To others on FDMB - the survey did not take long, and the questions were appropriate. I hope this helps some kittehs in the future.
     
  12. Cleocatra

    Cleocatra Member

    Joined:
    Feb 2, 2020
    I submitted a survey for Cleo.
     
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  13. AcroCatTeam

    AcroCatTeam New Member

    Joined:
    Dec 7, 2019
    Thank you, we really appreciate your participation.
     
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  14. Judy and Freckles

    Judy and Freckles Well-Known Member

    Joined:
    Oct 20, 2019
    I submitted a survey for Freckles.
     
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  15. Erin and Moe

    Erin and Moe Well-Known Member

    Joined:
    Sep 8, 2019
    Survey submitted for Moe
     
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  16. Lily's mom Ellen

    Lily's mom Ellen Member

    Joined:
    Jul 10, 2019
    Sienne, as a former IRB Administrator, I appreciate your mentioning this.
    I completed the survey for Lily who received her official acromegaly dx tonight - 381.
     
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  17. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Senior Member Moderator

    Joined:
    Dec 28, 2009
    Lily's mom Ellen likes this.
  18. Lily's mom Ellen

    Lily's mom Ellen Member

    Joined:
    Jul 10, 2019
    Thanks, Sienne. I've been in touch with Wendy and she's been so much help. I noticed there is an Acro # spreadsheet. Is that still active?
     
  19. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    It’s up to you if you want to add to the acro number spreadsheet, I never did. Some people like to see the variations in IGF-1 numbers.
     
  20. AcroCatTeam

    AcroCatTeam New Member

    Joined:
    Dec 7, 2019
    Hello everybody,

    We hope all is doing fine in this difficult time, both for you and yours feline friends.

    We just want to give you and update about the project, which keeps going on. We also added some other language versions (Portoguese and Spanish), thus involving other language-speaking countries.

    We remain at your disposal for any clarification about the survey or about the disease.

    Again, thank you for your help. We will keep you updated in the next months.
     
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