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<!doctype html>
<html lang="en">
<head>
<meta charset="utf8">
<meta http-equiv="X-UA-Compatible" content="IE=edge,chrome=1">
<meta name="viewport" content="width=device-width, initial-scale=1.0">
<title>OPEN Survey FAQs</title>
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<div class="scrollblock block-title w3-panel open-text w3-center">
<h1>OPEN Survey FAQs</h1>
</div>
<a name="purpose"></a>
<div class="scrollblock block-purpose w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('purpose')"><h2>What is the purpose of your study?</h2> </a>
<div id="purpose" style="display: none;">
<p>We want to find out if the use of do-it-yourself artificial pancreas systems (DIYAPS; open source loop systems) has an influence on the health and well-being of people with diabetes. Additionally, we want to examine the challenges associated with building DIYAPS, and why some people choose not to use DIYAPS.</p>
</div>
</div>
<a name="support_open"></a>
<div class="scrollblock block-support_open w3-panel">
<!--<a style="text-decoration: none;" href="javascript:toggle('<div id>')">-->
<a style="text-decoration: none;" href="javascript:toggle('work_with_OPEN_team')"><h2>How can I support the work of the OPEN team?</h2></a>
<div id="work_with_OPEN_team" style="display: none">
<p>You can:</p>
<ul>
<li><strong>Participate</strong> in our study on DIYAPS by completing the OPEN survey.</li>
<li><strong>Join Open Humans</strong> and link your account to the OPEN project in order to enable us to message you anonymously, e.g. for follow-up studies.</li>
<li><strong>Upload</strong> your CGM data to Open Humans and allow us to use them to deepen our research.</li>
<li><strong>Ask your partner</strong> to complete the partner survey and send them a participation link.</li>
<li><strong>Ask your teenage child</strong> (13-17 years) to fill out a few questionnaires, give your consent in our survey and send them a participation link.</li>
<li><strong>Tell people about our project - in person or online.</strong></li>
<li>Share the <strong><a href=https://open-diabetes.eu/open-survey target="_blank">URL</a></strong> to our website with friends who might be interested, e.g. via e-mail.</li>
</ul>
<p>Thank you very much for your effort and support!</p>
</div>
</div>
<a name="non_EU_participants"></a>
<div class="scrollblock block-non_EU_participants w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('non_EU_participants')"><h2>I don’t live in Europe. Can I still participate in your study?</h2></a>
<div id="non_EU_participants" style="display: none;">
<p><strong>Of course!</strong> EU-funded doesn’t mean that we are restricted to Europe. This is a <strong>global study</strong> – the more people participate, the better it will be!</p>
</div>
</div>
<a name="participate"></a>
<div class="scrollblock block-participate w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('participate')"><h2>Who can participate in your study?</h2></a>
<div id="participate" style="display: none;">
<p>Anyone who lives with diabetes! We are looking for:</p>
<ul>
<li><strong>Users</strong> of open source loop / do-it-yourself artificial pancreas systems (DIYAPS): <strong>Adults</strong> (18+ years) and <strong>Teenagers</strong> (13-17 years, with permission of their caregivers); this includes closed- AND open-loop mode</li>
<li><strong>Partners</strong> of DIYAPS users and of people with diabetes who are not using DIYAPS</li>
<li><strong>Parents/caregivers</strong> of children (2-17 years) who <strong>use</strong> DIYAPS</li>
<li><strong>Parents/caregivers</strong> of children (2-17 years) who are <strong>not using</strong> DIYAPS</li>
<li><strong>People with diabetes</strong> (18+ years) who are <strong>interested in DIYAPS</strong> but do not use such systems</li>
<li><strong>Users</strong> of <strong>commercial</strong> closed-loop systems (18+ years)</li>
</ul>
</div>
</div>
<a name="anonymity"></a>
<div class="scrollblock block-anonymity w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('anonymity')"><h2>Can I participate in your research study anonymously or do I have to give my name?</h2></a>
<div id="anonymity" style="display: none;">
<p>We care about your privacy and want you to participate <strong>anonymously</strong>. When you have read the information sheet and decided to take part in our survey, you will first be given a participant ID which guarantees your anonymity in the survey.</p>
<p>In case you decide to also join Open Humans and link your account to us, we can contact you anonymously without accessing any of your personal information on Open Humans. Please remember not to use any personal information (name/surname) while creating the Open Humans username profile. Use a pseudonym instead!</p>
<p>If you have uploaded or decide to now upload your device data (instructions on this are provided within the survey) to Open Humans and think this is a good opportunity to share it or some of it from there with us, we will protect your data.</p>
</div>
</div>
<a name="2_year_olds"></a>
<div class="scrollblock block-2_year_olds w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('2_year_olds')"><h2>My child is younger than 2 years old and has diabetes, can I still participate on their behalf?</h2></a>
<div id="2_year_olds" style="display: none;">
<p>We are very sorry, but your child is too young to be able to take part in this survey. The questionnaires that we use are only for parents of children 2 years old and above. However, we appreciate your interest and hope you’ll contribute to OPEN in the future!</p>
</div>
</div>
<a name="prepare"></a>
<div class="scrollblock block-prepare w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('prepare')"><h2>What do I need to fill out the survey? Is there anything I need to do to prepare?</h2></a>
<div id="prepare" style="display: none;">
<p>We will be asking questions about your experience with diabetes — either as a person with diabetes (PwD) or parent/caregiver or partner — so it is best to have any relevant medical documents with you before beginning the survey (e.g. HbA1c values, dates of diagnosis and beginning of insulin pump / CGM therapy / DIYAPS etc.) and the DIYAPS app if you are using one.</p>
</div>
</div>
<a name="skip_questions"></a>
<div class="scrollblock block-skip_questions w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('skip_questions')"><h2>Can I skip any questions?</h2></a>
<div id="skip_questions" style="display: none;">
<p>In some of the questionnaires you have to provide an answer to every question, but you can choose “I don’t know” or “I’d rather not say”. In most questionnaires, you can skip questions if you do not want to answer them. However, the more complete your answers are the more you are helping us with our research. </p>
</div>
</div>
<a name="survey_list"></a>
<div class="scrollblock block-survey_list w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('survey_list')"><h2>Can you please list exactly what I’m supposed to do as a participant?</h2></a>
<div id="survey_list" style="display: none;">
<ol>
<li>We kindly invite you to <strong>complete the survey</strong> we have prepared.</li>
<li><strong>Please sign up to Open Humans</strong> if you do not have an account already. Additionally, please <strong>link your account</strong> to the OPEN project on Open Humans. Only then can we keep you informed about follow-up studies by messaging you anonymously. We have a How-to explanation <a href=https://open-diabetes.eu/open-survey/survey-tutorials/ target="_blank">here</a> on our website and within our survey.</li>
<li>If you are interested in helping us <strong>take our research to the next level</strong> by combining your answers from the survey questionnaires with your health-related data, you can also “fill” your account on Open Humans with your <strong>device data</strong> and provide us access (see the question below “How do I upload data to Open Humans...”).</li>
</ol>
</div>
</div>
<a name="mobile"></a>
<div class="scrollblock block-mobile w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('mobile')"><h2>Which device should I use to complete the survey?</h2></a>
<div id="mobile" style="display:none;">
<p>Currently, we recommend using a desktop computer or laptop to complete our survey. If you decide to use a mobile device and experience any issues, please let us know! We are always looking for feedback from participants.</p>
</div>
</div>
<a name="browser"></a>
<div class="scrollblock block-browser w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('browser')"><h2>Which web browser should I use to complete the survey?</h2></a>
<div id="browser" style="display:none;">
<p>We recommend using Google Chrome as your web browser to complete our survey.</p>
</div>
</div>
<a name="survey_time"></a>
<div class="scrollblock block-survey_time w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('survey_time')"><h2>How much time will it take to complete the survey?</h2></a>
<div id="survey_time" style="display: none;">
<p>We have several short questionnaires - completing all of them should take approximately 20-30 minutes. You can always <strong>have a break</strong> and come back to where you left off in the questionnaires. For this you will <strong>need your participant ID</strong>.</p>
</div>
</div>
<a name="participant_id"></a>
<div class="scrollblock block-participant_id w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('participant_id')"><h2>What is a participant ID?</h2></a>
<div id="participant_id" style="display: none;">
<p>The protection of your identity and data is very important to us. Our study is under the General Data Protection Guidelines (GDPR) mandated by the EU, ensuring maximum protection and personal control for participants over their information. As such, in order to <strong>keep you anonymous</strong> we do not ask for your real name, but generate a Participant ID after you have given your consent to participate in our survey.</p>
<p>We ask you to <strong>write down, take a picture or email</strong> your Participant ID to yourself and keep it safe. <strong>You will need it later.</strong></p>
</div>
</div>
<a name="participant_id_later"></a>
<div class="scrollblock block-participant_id_later w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('participant_id_later')"><h2>Why do I need my participant ID later?</h2></a>
<div id="participant_id_later" style="display: none;">
<p>If there is an interruption during the survey or you need a break (e.g. <strong>before joining Open Humans</strong>), your participant ID will allow you to return to the “How you can help” page at any time. Besides that, you will need your Participant ID when you want to take part in our <strong>follow-up surveys</strong>. And last but not least, you need your Participant ID when you join the OPEN project on Open Humans because you want the OPEN research team to combine your answers in the survey with your uploaded device data.</p>
</div>
</div>
<a name="open_humans"></a>
<div class="scrollblock block-open_humans w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('open_humans')"><h2>What is Open Humans?</h2></a>
<div id="open_humans" style="display: none;">
<p>Open Humans is a <strong>non-profit data repository</strong> site used by individuals, researchers and communities who want to leverage their data to the benefit of education, health and research. Open Humans provides the same tools to researchers and <strong>citizen scientists</strong> alike, creating an online space for <strong>cooperative research efforts</strong>.</p>
</div>
</div>
<a name="open_humans_account"></a>
<div class="scrollblock block-open_humans_account w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('open_humans_account')"><h2>How do I create an account with Open Humans? </h2></a>
<div id="open_humans_account" style="display: none;">
<p>If you decide to voluntarily donate your device data via Open Humans, here is a step-by-step guide to creating your Open Humans account:</p>
<ol>
<li>Head over to the <a href=https://www.openhumans.org/ target="_blank">Open Humans website</a>.</li>
<li>Click “Join Now!” in the upper right-hand corner of the landing page. You will be prompted to continue with either Facebook, Google or Email; please choose to continue with Email.</li>
<li>Here, you will be prompted to choose a public username and name for yourself, as well as an email address and password for notifications and security. Note: PLEASE pick a username AND name for yourself that is not easily identifiable. This will help to ensure anonymity while working with us at OPEN.</li>
<li>Click “Create my account”, at which point a verification message will be sent to your listed email address. Please follow the instructions in this verification message.</li>
<li>Celebrate; you’re done!</li>
</ol>
<p>Congratulations! You’ve now successfully created an account with Open Humans.</p>
<p>How to create an account will also be thoroughly explained in the survey and <a href=https://open-diabetes.eu/en/open-survey/survey-tutorials/ target="_blank">here</a> on our website.</p>
</div>
</div>
<a name="open_project_on_open_humans"></a>
<div class="scrollblock block-open_project_on_open_humans w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('open_project_on_open_humans')"><h2>How do I join the OPEN project on Open Humans?</h2></a>
<div id="open_project_on_open_humans" style="display: none;">
<p>The best option is to follow the survey instructions. Within the survey you will find the links to the relevant Open Humans website pages. Each of them will open in a new tab so that you can proceed step by step. Don´t forget: You can take a break at any time and sign back into the survey with your Participant ID. If you need more help, look at our How-to tutorials <a href=https://open-diabetes.eu/en/open-survey/survey-tutorials/ target="_blank">here</a> on our website. Another option will be to start from the <a href=https://www.openhumans.org target="_blank">Open Humans</a> website. Click on “Explore and Share” in the upper right-hand corner. Scroll down to the OPEN project and click the button “Learn more”. Read the information and click the button “Connect project”. This will lead you directly to the OPEN survey and you can proceed from there.</p>
</div>
</div>
<a name="open_humans_upload_data"></a>
<div class="scrollblock block-open_humans_upload_data w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('open_humans_upload_data')"><h2>How do I upload data to Open Humans and make sure that the OPEN project receives my data?</h2></a>
<div id="open_humans_upload_data" style="display: none;">
<p>We want to make data donation as easy as possible. Uploading data to Open Humans can be done from different data sources. This will be thoroughly explained in the survey and <a href=https://open-diabetes.eu/open-survey/survey-tutorials/ target="_blank">here</a> on our website.</p>
<p><strong>Attention:</strong> Every time you upload <strong>new data</strong> to Open Humans, you have to <strong>link your account with the OPEN project again</strong> if you want us to use the new data for our research.</p>
</div>
</div>
<a name="data_protection"></a>
<div class="scrollblock block-data_protection w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('data_protection')"><h2>How will my data be protected?</h2></a>
<div id="data_protection" style="display: none;">
<p>For this, it is important to know that you have to differentiate between the two different data sets that you can provide us with:</p>
<ol>
<li>The data we get from your answers at the survey questionnaires and the CGM/loop device data you share with us via Open Humans will be stored on a server in the USA.</li>
<li>The data from the survey will be stored at the RedCap server of the Charité Universitätsmedizin Berlin, Germany.</li>
</ol>
<p>Both data sets will be used by the OPEN team for their research.</p>
</div>
</div>
<a name="questionnaire_data"></a>
<div class="scrollblock block-questionnaire_data w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('questionnaire_data')"><h2>What will happen with my data from the questionnaires after the OPEN project?</h2></a>
<div id="questionnaire_data" style="display: none;">
<p>Once the OPEN team has finished their research a cleaned data set of your <strong>anonymised data</strong> will be <strong>archived</strong> at the Charité Universitätsmedizin Berlin, Germany. This survey data will be available to researchers upon request. To protect your privacy, any information that might lead to your identity will be removed from your data set before being accessed by any researchers.</p>
</div>
</div>
<a name="donated_data_OH"></a>
<div class="scrollblock block-donated_data_OH w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('donated_data_OH')"><h2>What will happen with my donated data (OH) after the OPEN project?</h2></a>
<div id="donated_data_OH" style="display: none;">
<p>The data you donated via the Open Humans (OH) platform will be kept only within the OPEN research team and not shared outside of the project. lt will not be given to other researchers or any other person, nor will it be sold When the OPEN Project is completed, the data will be safely archived with University College Dublin and only accessible to OPEN researchers for authorized further research. Open Humans is in compliance with US Data Protection laws and EU GDPR regulations; these policies apply to all members, including the OPEN Project. Users have rights for accessing their data, control over access by third parties, and private data is <strong>never</strong> shared.</p>
</div>
</div>
<a name="change_mind_upload_data"></a>
<div class="scrollblock block-change_mind_upload_data w3-panel">
<a style="text-decoration: none;" href="javascript:toggle('change_mind_upload_data')"><h2>What happens if I upload my data and then change my mind later?</h2></a>
<div id="change_mind_upload_data" style="display: none;">
<p>As a user of Open Humans (OH), you have a <em>Right to Erasure</em> according to GDPR regulations. Users are able to remove themselves from projects and request deletion of previously shared files. Data erased on OH is immediately removed from the database and can no longer be accessed by the website or by projects that were previously authorized. If you would also like your data removed from any research related to the OPEN project, please contact the administrators and we will do our best to remove your data set from the data being used for those particular studies or projects.</p>
</div>
</div>
<a name=></a>
<div class="scrollblock block- w3-panel open-black">
<a style="text-decoration: none;" href="javascript:toggle('')"><h2></h2></a>
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<p></p>
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<div id="footer" class="scrollblock block w3-panel open-text w3-center w3-tiny">
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