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IDEA-FAST survey for people with chronic diseases

 

 

Background information:

IDEA-FAST is a research project being undertaken from Kiel University and the University Medical Center Schleswig-Holstein (UKSH) supported by Parkinson’s UK, Lupus UK, Sjogren Europe, European Huntington Association, EFCCA, Empirica, Newcastle University and Asociación Parkinson Madrid. The aim of this project is to find better measures for fatigue and sleep disturbances with the help of digital technology, such as smartwatches. Fatigue can be best defined as an unpleasant physical, cognitive, and emotional symptom described as a tiredness not relieved by common strategies that restore energy (e.g. sleep). Fatigue varies in duration and intensity, and it reduces, to different degrees, the ability to perform the usual daily activities. IDEA-FAST is the first step towards finding better treatments for fatigue and sleep disturbances for people with chronic disease.

We are designing a clinical study which will involve people with Parkinson’s Disease, Huntington’s Disease, Crohn’s Disease, Ulcerative Colitis, Rheumatoid Arthritis, Systemic Lupus Erythematosus or Primary Sjögren’s Syndrome. The aim of this study is to test how well different digital devices capture peoples’ experience of fatigue and sleep disturbances. If researchers are better able to measure fatigue and sleep, this will make it easier to develop therapies to reduce the impact of fatigue and sleep disturbances on daily life. Therefore, this study is a first step towards improving treatment of these symptoms.

 

 

The purpose of this survey

We would like to gather anonymous feedback from people affected by the diseases mentioned above to help us design the study. We would like to understand what would think would be acceptable if you were part of a study like this. We are currently NOT looking for participants for this study: currently we are just seeking feedback on what the study should look like.

This survey will take approximately 15 minutes and we will not collect any personally identifiable information.

 

Benefits and risks

There will be no direct benefit to you for participating in this survey. Similarly, there are no known risks associated with completing the survey.

 

What will happen if I don’t want to complete the survey?

You can withdraw from the survey at any time. All information you provide is useful and may still be used, even if you do not complete the survey.

 

Who can access my data?

Data will be primarily accessed by researchers at Kiel University. Further analysis may be performed by research collaborators outside the University.

 

Data Protection (General Data Protection Regulation)

Kiel University is the initiator of this study. We will be using the information provided by you and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the survey, we will keep the information that you have already provided.

If you have any concerns about the use of your data you can report these to the UKSH Data Protection Officer (DPO). Currently this is Dr Stefan Reuschke who can be reached by phone (+49 431 500-14180) or email (Stefan.Reuschke@uksh.de). In addition, you may file a complaint with the State Data Protection Commissioner of Schleswig-Holstein if you believe that your rights under data protection legislation have been violated. The State Data Protection Commissioner can be contacted at mail@datenschutzzentrum.de.

 

What will happen to the results of the research study?

Once we have results we will aim to publish them in peer reviewed scientific journals. We may also present the findings at national and international meetings.

 

Who has reviewed the survey?

This study has been reviewed by the ethics committee of the medical faculty of Kiel University.

 

Thank you for taking the time to read this.

There are 25 questions in this survey.
This survey is anonymous.

The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it.

If you used an identifying access code to access this survey, please rest assured that this code will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification access codes with survey responses.

I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason. I understand that the anonymised information collected about me will be stored and used to support other research in the future, and may be shared with other researchers.

I agree to participate in this survey.