forked from drewcooper25/open-faq
-
Notifications
You must be signed in to change notification settings - Fork 0
/
Copy pathindex.html
199 lines (179 loc) · 14 KB
/
index.html
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32
33
34
35
36
37
38
39
40
41
42
43
44
45
46
47
48
49
50
51
52
53
54
55
56
57
58
59
60
61
62
63
64
65
66
67
68
69
70
71
72
73
74
75
76
77
78
79
80
81
82
83
84
85
86
87
88
89
90
91
92
93
94
95
96
97
98
99
100
101
102
103
104
105
106
107
108
109
110
111
112
113
114
115
116
117
118
119
120
121
122
123
124
125
126
127
128
129
130
131
132
133
134
135
136
137
138
139
140
141
142
143
144
145
146
147
148
149
150
151
152
153
154
155
156
157
158
159
160
161
162
163
164
165
166
167
168
169
170
171
172
173
174
175
176
177
178
179
180
181
182
183
184
185
186
187
188
189
190
191
192
193
194
195
196
197
198
199
<!doctype html>
<html lang="en">
<head>
<meta charset="utf8">
<meta http-equiv="X-UA-Compatible" content="IE=edge,chrome=1">
<title>BIG OPEN Survey FAQs</title>
<link rel=”stylesheet” type=”text/css” href=”style/style.css” />
<link rel="stylesheet" href="style/w3.css">
<link rel="stylesheet" href="style/w3-colors-flat.css">
<script type="text/javascript">
//Function for unfolding
function toggle(control){
var elem = document.getElementById(control);
if(elem.style.display == "none"){
elem.style.display = "block";
}else{
elem.style.display = "none";
}
}</script>
</head>
<body>
<div class="scrollblock block-title">
<h1>BIG OPEN Survey FAQs</h1>
<p>Frequently asked questions regarding our Big OPEN Survey</p>
</div>
<a name="purpose"></a>
<div class="scrollblock block-purpose w3-panel open-blue">
<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 open-orange">
<!--<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">
<ul>
<li>Participate in our study on DIYAPS by completing the OPEN survey.</li>
<li>Join Open Humans 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>Upload your CGM data to Open Humans and allow us to use them to deepen our research.</li>
<li>Send a participation link to your partner.</li>
<li>Sign-in to our study, give permission to your teenage child (13-17 years) to fill out some questionnaires and send them a participation link.</li>
<li>Tell people about our project - in person or online.</li>
<li>Share the URL to our website (link to according website page) with friends who might be interested, e.g. via e-mail.</li>
</ul>
</div>
</div>
<a name="non_EU_participants"></a>
<div class="scrollblock block-non_EU_participants w3-panel w3-red">
<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>Of course! 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="non_loop_non_diy"></a>
<div class="scrollblock block-non_loop_non_diy w3-panel w3-green">
<a style="text-decoration: none;" href="javascript:toggle('non_loop_non_diy')"><h2>I am using a closed-loop system, but it is not DIY/open source.
I am not using any loop/do-it-yourself artificial pancreas system (DIYAPS).
Can I participate in your study?</h2></a>
<div id="non_loop_non_diy" style="display: none;">
<p>Yes! We are also looking for participants who are looping with a commercial loop and for participants who are not looping at all. Read more here: Who can participate…</p>
</div>
</div>
<a name="participate"></a>
<div class="scrollblock block-participate w3-panel open-yellow">
<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>We are looking for:</p>
<ul>
<li>users of open source loop / do-it-yourself artificial pancreas systems (DIYAPS): Adults ( 18+ years) and Teenagers (13-17 years; with parental permission)</li>
<li>partners of DIYAPS users and of people with diabetes who are not using DIYAPS</li>
<li>parents/caregivers of children (2-17 years) who use DIYAPS</li>
<li>parents/caregivers of children (2-17 years) who are not using DIYAPS</li>
<li>people with diabetes (18+ years) who are interested in DIYAPS but do not use such systems</li>
<li>users of commercial closed-loop systems (18+ years)</li>
</ul>
</div>
</div>
<a name="2_year_olds"></a>
<div class="scrollblock block-2_year_olds w3-panel open-green">
<a style="text-decoration: none;" href="javascript:toggle('2_year_olds')"><h2>My child is younger than 2 years and I would like to participate on their behalf.</h2></a>
<div id="2_year_olds" style="display: none;">
<p>We are very sorry but it is not possible to participate on behalf of your child if they are younger than 2 years old. This is because certain questionnaires are not available for children this young.</p>
</div>
</div>
<a name="openloop_diyaps"></a>
<div class="scroll block block-openloop_diyaps w3-panel open-navy">
<a style="text-decoration: none;" href="javascript:toggle('openloop_diyaps')"><h2>I am using a DIYAPS in open-loop mode. Can I participate?</h2></a>
<div id="openloop_diyaps" style="display: none;">
<p>Yes! If you haven't closed the loop (yet), you can still participate in our study. During the questionnaire, you will get the opportunity to specify the system you are using.</p>
</div>
</div>
<a name="anonymity"></a>
<div class="scrollblock block-anonymity w3-panel open-orange">
<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 want you to participate anonymously. If 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.</p>
<p>If you have uploaded or decide to now upload your CGM device data 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="survey_time"></a>
<div class="scrollblock block-survey_time w3-panel open-blue">
<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>The time needed to complete the survey depends on the type of participant. We have several short questionnaires for you which should take approximately 30 minutes to complete. You can always have a break and come back to where you left off in the questionnaires. For this you will need your participant ID.</p>
</div>
</div>
<a name="participant_id"></a>
<div class="scrollblock block-participant_id">
<h2>What is a participant ID?</h2>
<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 keep you anonymous we do not ask for your real name, but generate a Participant ID.</p>
<p>We ask you to write down, take a picture or email your Participant ID to yourself and keep it safe. You <strong>will</strong> need it later.</p>
</div>
<a name="survey_list"></a>
<div class="scrollblock block-survey_list">
<h2>Can you please list exactly what I’m supposed to do as a participant?</h2>
<ol>
<li>We kindly invite you to complete the survey we have prepared.</li>
<li>Once you have completed the survey, if you would like to be personally informed about follow-up studies, we can message you without re-identifying you if you have an <strong>account on Open Humans</strong> and link it to our project. We have a How-to explanation here (link) 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 CGM data and provide us access (see How-to below).</li>
</ol>
<p><strong>Attention:</strong> Every time you upload new data you have to link your account with the OPEN project again if you want us to use the new data for our research.</p>
<p>Uploading data to Open Humans can be done in several ways. This will be thoroughly explained at the survey and here (link) on our website.</p>
</div>
<a name="data_protection"></a>
<div class="scrollblock block-data_protection">
<h2>How will my data be protected?</h2>
<p>First of all, the protection of your data is ….</p>
<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>
<a name="open_humans"></a>
<div class="scrollblock block-open_humans">
<h2>What is Open Humans?</h2>
<p>Open Humans is a non-profit data repository site...</p>
</div>
<a name="open_humans_account"></a>
<div class="scrollblock block-open_humans_account">
<h2>How do I create an account with Open Humans?</h2>
<p>Here… link to Open Humans...</p>
</div>
<a name="open_humans_to_open_project"></a>
<div class="scrollblock block-open_humans_to_open_project">
<h2>How do I join the OPEN project on Open Humans? </h2>
<p>...</p>
</div>
<a name="open_humans_upload_data"></a>
<div class="scrollblock block-open_humans_upload_data">
<h2>How do I upload data to Open Humans and make sure that the OPEN project receives those too?</h2>
<p>...</p>
</div>
<a name="questionnaire"></a>
<div class="scrollblock block-questionnaire">
<h2>What will happen with my data from the questionnaires after the OPEN project?</h2>
<p>Once the OPEN team has finished their research a cleaned data set...</p>
</div>
<a name="donated_data"></a>
<div class="scrollblock block-donated_data">
<h2>What will happen with my donated data after the OPEN project?</h2>
<p>The data you donated via the Open Humans 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. Please see the <a href=https://www.openhumans.org/gdpr/ target="_blank">Open Humans GDPR page</a> for further details.</p>
</div>
<a name="change_mind_upload_data"></a>
<div class="scrollblock block-change_mind_upload_data">
<h2>What happens if I upload my data and then change my mind later?</h2>
<p>As a user of Open Humans, under GDPR regulations you have a Right to Erasure. Users are able to remove themselves from projects and request deletion of previously shared files. Data erased on Open Humans is immediately removed from the database and can no longer be accessed by the website or by projects that were previously authorized.</p>
</div>
<a name="prepare"></a>
<div class="scrollblock block-prepare">
<h2>What do I need to fill out the survey? Is there anything I need to do to prepare?</h2>
<p>We will be asking questions about your experience with diabetes — either as a PwD or parent/guardian or partner — so it is best to have any relevant medical documents with you before beginning the survey (e.g. HbA1c values, etc.).</p>
</div>
</body>
</html>