Open to anyone living with lipodystrophy.

Thank you for your interest in our research project! All survey responses are anonymised. If you decide to leave an email address, we will only use it to contact you about research participation. 
 
What are we doing?
The aim of this survey is to collect information about how fatigue affects people living with lipodystrophy.
 
Lipodystrophy UK has composed a list of research priorities that are most important to its patient members. Despite fatigue and poor sleep quality being a major problem for a lot of people with lipodystrophy, there is very little known about it. So, Lipodystrophy UK has teamed up with the Patient Led Research Hub and clinical experts in metabolic disorders (National Severe Insulin Resistance Service) and fatigue (Newcastle Centre for Fatigue Research) to launch a new research project. 
 
By completing this survey, you will provide important insight into what it's like to live with lipodystrophy and fatigue. Your answers will help us design a new study that's simple to join (a secure, encrypted online 'patient portal' where you can enter your own data) and of benefit to both patients and clinicians; you will also provide supporting evidence for our funding application. 
 
Please contact Laura Cowley at the PLRH (plrh@hermes.cam.ac.uk) with any questions or feedback.
 

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* 1. What type of lipodystrophy do you have?

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* 2. If you have inherited lipodystrophy, please indicate the specific gene mutation you have been diagnosed with.

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* 3. How often do you suffer with daytime fatigue?

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* 4. How often do you suffer with poor sleep quality?

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* 5. Do you have another condition that might contribute to poor sleep quality or fatigue (for example: sleep apnoea, fibromyalgia, depression, joint pain, etc.)? If so, please explain and list any specific therapies you are taking for the condition (e.g. anti-depressants).

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* 6. Does poor sleep quality and/or daytime fatigue significantly impact your: (please tick all that apply)

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* 7. Do you often feel light-headed or dizzy, or have you been diagnosed with low blood pressure? If so, please explain.

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* 8. Have you been diagnosed with diabetes? If so, is it well controlled? Please explain and/or indicate your average blood glucose (HbA1c).

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* 9. Would you be interested in participating in a research study where you enter your own data and complete questionnaires through a secure, encrypted online ‘patient portal’?

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* 10. If you would like to be contacted about our new research project, please leave your email address. 

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