225 lines
13 KiB
HTML
225 lines
13 KiB
HTML
{% load i18n %}
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<section id="settings" class="consent">
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<div>
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{% if openhumansmember.surveyaccount.consent_given %}
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<h2>{% trans "You have given your consent, however you can still withdraw it at any time." %}</h2>
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<div>
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<div>
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{% else %}
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<h2 class="alert alert-warning">
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{% trans "You must first consent to the following before getting started with your survey" %}</h2>
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{% endif %}
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<ol class="consent__list">
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<li>
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<h3 data-collapse aria-expanded="false">{% trans "What the survey is about ?" %}
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<svg xmlns="http://www.w3.org/2000/svg" height="12" width="20" viewbox="0 0 20 12" class="chevron chevron--closed">
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<line x1="0" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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<line x1="20" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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</svg>
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</h3>
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<p class="collapse__item">
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{% blocktrans %}
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As part of this project, we are carrying out an ongoing survey to collect health data on the current
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COVID-19
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pandemic. We are doing this in an open and participatory setting, so that everyone can contribute
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cooperatively and anonymously to support the global effort to contain the COVID-19 pandemic and learn
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lessons
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for the future. While most of the world is in a quarantine situation, the majority of COVID-19 patients
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are at
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home without regular medical monitoring of disease progression, symptoms, recovery or well-being. Data
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from
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patients reporting symptoms at a distance could provide scientists with indications of the different forms
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of
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the disease and possible links to parameters such as medical history, physical and mental health, social
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distancing, etc. The data could also be used to develop a new approach to the management of the disease.
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The survey includes volunteer participants aged 18 years and older. You will be asked to answer a survey
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every
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day for 2-5 minutes each day, during the pandemic period and until the end of May 2022, with questions
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about
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the symptoms you are experiencing, how you are doing and some details about your medical history and
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demographics.
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You will be able to access your data at any time, as well as all anonymized data acquired in this study.
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In
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addition, as a participant, you will be invited to suggest and discuss new survey questions in an
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anonymous
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participant forum. Neither answering the survey questions or participation in the forum discussions are
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compulsory.
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{% endblocktrans %}
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</p>
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</li>
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<li>
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<h3 data-collapse aria-expanded="false">{% trans "What are the expected benefits ?" %}
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<svg xmlns="http://www.w3.org/2000/svg" height="12" width="20" viewbox="0 0 20 12" class="chevron">
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<line x1="0" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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<line x1="20" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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</svg>
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</h3>
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<p class="collapse__item">
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{% blocktrans %}
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Participation in this study will not provide you with any direct personal benefit, but may provide
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scientists
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with new data. Although the risk is minimal, the individual survey questions can sometimes be intrusive.
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You
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may, of course, choose not to answer these questions, skip them, or terminate your participation. Your
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involvement is voluntary; refusal to participate will not result in any penalties or loss of benefits to
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which
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you are entitled, and you can end your participation (and/or request that your previous data be deleted)
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at
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any time without consequence.
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{% endblocktrans %}
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</p>
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</li>
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<li>
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<h3 data-collapse aria-expanded="false">{% trans "What is the survey schedule?" %}
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<svg xmlns="http://www.w3.org/2000/svg" height="12" width="20" viewbox="0 0 20 12" class="chevron">
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<line x1="0" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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<line x1="20" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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</svg>
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</h3>
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<p class="collapse__item">
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{% blocktrans %}
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The study takes place from 1 June 2020 to 31 May 2022. You can stop participating at any time before the
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end
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of the study.
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The research is conducted via an online or SMS survey, a platform to access your data and an anonymous
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forum
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to discuss new survey items that should be added. Take as much time as you wish before making a decision.
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We
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will be happy to answer any questions you may have about this study. If you have any further questions
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about
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this project or if you have a problem with the research, you can contact the study coordinator, Anirudh
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Krishnakumar, MSc, by phone at +33 1 84 25 68 04, or by e-mail, anirudh.krishnakumar@cri-paris.org.
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{% endblocktrans %}
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</p>
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</li>
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<li>
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<h3 data-collapse aria-expanded="false">{% trans "Research Data Users." %}
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<svg xmlns="http://www.w3.org/2000/svg" height="12" width="20" viewbox="0 0 20 12" class="chevron">
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<line x1="0" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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<line x1="20" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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</svg>
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</h3>
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<p class="collapse__item">
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{% blocktrans %}
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All data will be stored on secure servers, protected by firewall and password, of Open Humans &
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OpenClinica,
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in accordance with European data protection regulations. This study does not collect individual
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identifiers
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such as name, physical or e-mail addresses. Instead, Open Humans assigns each participant a study
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identification number upon registration. Only this study identification number will be accessible by
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research
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personnel. Finally, participants' data will not be sold and data sharing will be conducted under strict
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protocol-based procedural guidelines. Participants will be able to remove their data from the study at any
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time.
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{% endblocktrans %}
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<br/><br/>
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<em>
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{% blocktrans %}
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Note : The governments in some countries / regions may monitor internet traffic.
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In some countries / regions, monitoring of data transmitted over the internet may occur.
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The researchers cannot control or protect you from risks associated with this monitoring during the submission of your survey responses.
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If you are concerned that your personal or health data will be monitored and that this may put you at some risk,
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then we recommend that you do not participate in this survey.
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{% endblocktrans %}
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</em>
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</p>
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</li>
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<li>
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<h3 data-collapse aria-expanded="false">
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{% trans "What will happen to the data collected for the research ?" %}
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<svg xmlns="http://www.w3.org/2000/svg" height="12" width="20" viewbox="0 0 20 12" class="chevron">
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<line x1="0" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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<line x1="20" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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</svg>
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</h3>
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<p class="collapse__item">
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{% blocktrans %}
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The anonymised data will be made available to all participants and the scientific community, and will be
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distributed with all publications resulting from this study. If necessary to protect the privacy of
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participants, individual data may be deleted or only shared in aggregate form. This data cannot be used to
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identify participants. In addition, each participant will receive a copy of his or her own data as part of
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this study.
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{% endblocktrans %}
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</p>
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</li>
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<li>
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<h3 data-collapse aria-expanded="false">{% trans "What rights do you have ?" %}
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<svg xmlns="http://www.w3.org/2000/svg" height="12" width="20" viewbox="0 0 20 12" class="chevron">
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<line x1="0" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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<line x1="20" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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</svg>
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</h3>
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<p class="collapse__item">
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{% blocktrans %}
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In accordance with the French Data Protection Act of 6 January 1978 as amended and with European
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Regulation
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n°2016/679/EU of 27 April 2016 ( effective as of 25 May 2018), you may at any time request access,
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rectification, withdrawal or request that the data provided about you be communicated to you without
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incurring
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any liability or prejudice as a result.
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Limitations to the exercise of these various rights will be examined in application of Article 89-2 of the
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DPMR (European Data Protection Regulation) relating to exceptions in the field of research.
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For further information on research, please contact Ariel Lindner (ariel.lindner@inserm.fr).
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To exercise these rights or if you have any questions about the processing of your data in this system,
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you
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can contact our data protection officer, Lionel Devaux (lionel.devaux@cri-pari.org).
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If you feel, after contacting us, that your rights to Information Technology and Liberties are not
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respected,
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you can send a complaint to the CNIL (Commission Nationale Informatique et Libertés www.cnil.fr).
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{% endblocktrans %}
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</p>
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</li>
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<li>
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<h3 data-collapse aria-expanded="false">{% trans "Information on the results of the survey" %}
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<svg xmlns="http://www.w3.org/2000/svg" height="12" width="20" viewbox="0 0 20 12" class="chevron">
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<line x1="0" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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<line x1="20" y1="0" x2="10" y2="10" stroke="currentColor" stroke-width="2" />
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</svg>
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</h3>
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<p class="collapse__item">
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{% blocktrans %}
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You have the right to see the results of this study. As soon as the results are available, we will publish
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them openly on the project website on Open Humans and distribute them to all participants.
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{% endblocktrans %}
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</p>
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</li>
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</ol>
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<ul>
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<li>
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{% trans "I have read the above information for participants and my questions regarding participation in the study have been answered satisfactorily." %}
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</li>
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<li>
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{% trans "I know that I can print this information or request a copy at any time and that I can withdraw from the study at any time without giving reasons and without any negative consequences." %}
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</li>
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<li>
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{% trans "I agree that the Principal Investigators and their collaborators may have access to the original data in strict compliance with the rules of confidentiality." %}
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</li>
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<li>
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{% trans "I am aware that the investigator may, without mutual consent, exclude me from the study if I do not meet the inclusion criteria." %}
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</li>
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<li>
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{% trans 'By clicking on the "ACCEPT" button, I certify that I accept all the above-mentioned points and that I am participating in this study on a voluntary basis.' %}
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</li>
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</ul>
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{% if openhumansmember.surveyaccount.consent_given %}
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</div>
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</div>
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{% endif %}
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</div>
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<form action="{% url "consent" %}" method="POST">
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{% csrf_token %}
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<button type="submit" class="button--orange" role="button">
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{% if openhumansmember.surveyaccount.consent_given %}
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{% trans "WITHDRAW MY CONSENT" %}
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{% else %}
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{% trans "ACCEPT" %}
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{% endif %}
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</button>
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</form>
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</section>
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