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Join dementia research - register your interest in dementia research : For Professionals: Researchers
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</a></li> <li><a onclick="hideBackgroundMobile(this)" href="https://news.joindementiaresearch.nihr.ac.uk/category/volunteer-stories/" title="Volunteer stories" aria-label="Volunteer stories" >Volunteer stories </a></li> <li><a onclick="hideBackgroundMobile(this)" href="https://news.joindementiaresearch.nihr.ac.uk/" title="News" aria-label="News" >News </a></li> <li class="dropdown"><a aria-expanded="false" href="#" data-toggle="dropdown" >For professionals<b class="caret"></b></a> <ul class="dropdown-menu"> <li class="nav-dropdown-item"><a onclick="hideBackgroundMobile(this)" href="/content/researchers" title="Researchers" aria-label="Researchers">Researchers </a></li> <li aria-hidden="true" class="divider"></li> <li class="nav-dropdown-item"><a onclick="hideBackgroundMobile(this)" href="http://nhs.joindementiaresearch.nihr.ac.uk/" title="Healthcare" aria-label="Healthcare">Healthcare </a></li> </ul> </ul> </div> </nav> </header> <script> var logoutLinks = document.querySelectorAll('.logoutLink'); logoutLinks.forEach(function(link) { link.addEventListener('click', function(event) { event.preventDefault(); var form = document.getElementById('logoutForm'); form.submit(); }); }); function tagManager(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start': new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0], j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src= 'https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f); }; function acceptCookies(){ tagManager(window,document,'script','dataLayer','GTM-KC8DBM4') raft.cookie.setCookies('jdrAdditionalCookies', 'accepted', 180); } function registerByPhoneClicked(){ window.open('/register-by-phone','_self'); } function loginBtnClicked(){ window.open('/signup?question=start&true','_self'); } </script> <section class="Researchers"> <section> <div id="main" role="main"> <article class="col-md-8"> <h1>Researchers</h1> <img src="/images/professionals/ARUK-Image-182---WebReady.jpg" alt=""/> <h2>This page is for researchers looking for ways to improve recruitment into a study or to see if a study idea is feasible.</h2> <p>Join Dementia Research improves the timeliness of study recruitment providing researchers will access to thousands of potential volunteers who want to be involved in research.</p> <p>What can you do as a researcher?</p> <ul> <li><strong>Identify potential participants</strong></li> <li><strong>Screen and contact volunteers</strong></li> <li><strong>Run feasibility tests for future studies</strong></li> </ul> <blockquote> <p>“It is that it is often difficult to find the right people for a particular study.<br> Most of the time, we see people at our memory clinics, however, finding the eligible patients who satisfy the criteria and are willing to participate in different studies is a challenge… When a research study is listed on Join Dementia Research, researchers have the ability to add specific criteria for their study, and then match the patients with this."</p> <p style="text-align:right;">Dr Paul Edison, Imperial College London</p> </blockquote> <h2 style="margin-top:0px;">Interested in using the service?</h2> <p>Join Dementia Research has been established to support all ethically approved dementia research studies taking place in the UK.</p> <h3>NIHR Clinical Research Network (CRN) Portfolio studies </h3> <p><span style="font-family:FrutigerRoman, Arial, sans-serif;font-size:16.8px;">Studies on the </span><a href="https://www.nihr.ac.uk/researchers/collaborations-services-and-support-for-your-research/run-your-study/crn-portfolio.htm">NIHR CRN Portfolio</a><span style="font-family:FrutigerRoman, Arial, sans-serif;font-size:16.8px;"> are routinely considered for inclusion on Join Dementia Research as part of the Clinical Research Network set-up process. If your study has not been added, please email </span><a href="mailto:jdr.support@nihr.ac.uk">jdr.support@nihr.ac.uk</a><a style="background-color:rgb(255, 255, 255);" href="mailto:research.jdr@nihr.ac.uk?subject=Research%20Delivery%20-%20Supporting%20NIHR%20CRN%20Portfolio%20Studies"> </a><span style="font-family:FrutigerRoman, Arial, sans-serif;font-size:16.8px;">to discuss inclusion.</span></p> <h3>Other dementia studies and student research</h3> <p>We have extended the use of Join Dementia Research to all ethically approved dementia studies which are suitable to recruit from a register.</p> <p>If your study is not on the NIHR CRN Portfolio and you would like to use the service you will need:</p> <p>1) To complete the <a href="https://docs.google.com/a/nihr.ac.uk/forms/d/1vWLGXfbL1zAvUCrlJUewQ_CmICiIBCq3kTlNf_RCxss/viewform" target="blank" title="Open in a new tab.">Join Dementia Research Study Application Form</a> <br> 2) A Join Dementia Research Research Account and user training<br> 3) Your study to have appropriate ethics approval<br> 4) To provide an Lay Summary that is written in plain English <a href="https://www.nihr.ac.uk/plain-english-summaries" target="blank" title="Open in a new tab.">NIHR Plain English Guide</a></p> <p>The Join Dementia Research office will support you during the application process. For further information on each of these stages, review the FAQs below and the information included in the application form.</p> <p><span style="font-family:FrutigerRoman, Arial, sans-serif;font-size:16.8px;">Once we receive your completed application form, we will be in touch within 10-15 working days to discuss your application and any next steps.</span></p> <div class="greyBox"> <a href="https://docs.google.com/a/nihr.ac.uk/forms/d/1vWLGXfbL1zAvUCrlJUewQ_CmICiIBCq3kTlNf_RCxss/viewform" target="blank" title="Open in a new tab."><strong>Join Dementia Research Study Application Form</strong></a> </div> <p> </p> <h2>About the service</h2> <div class="panel-group" id="accordion"> <div class="panel" id="accordionGroup"> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion1" aria-controls="researchersAccordion1Body">What is the overall aim of Join Dementia Research?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion1Body" aria-labelledby="researchersAccordion1"> <p>Join Dementia Research is an easy-to-use service which allows people to register their interest in dementia research, so that they can be contacted about relevant research studies. The overall aim is to improve and speed up study recruitment, and improve volunteers access to research.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion2" aria-controls="researchersAccordion2Body">What are the advantages for me as a researcher?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion2Body" aria-labelledby="researchersAccordion2"> <p>Join Dementia Research has thousands of volunteers who want to be involved in dementia research. The service helps researchers improve study recruitment, ensuring studies are delivered on time, to target.</p> <p>The additional feasibility tool helps ensure future studies can be well informed, ensuring deliverability.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion3" aria-controls="researchersAccordion3Body">How can I get my study on Join Dementia Research?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion3Body" aria-labelledby="researchersAccordion3"> <p class="panel-body">Studies on the NIHR Clinical Research Network Portfolio can be uploaded from the National Institute for Health and Care Research Clinical Research Network (NIHR-CRN) portfolio system, for further information please contact your nearest <a href="https://www.nihr.ac.uk/documents/study-support-service-contacts/11921" title="Open in a new tab." target="blank"><u>local CRN</u></a>.<br><br> If your study is not on the NIHR CRN Portfolio, the first step is to complete the <a style="background-color:rgb(255, 255, 255);" href="https://docs.google.com/a/nihr.ac.uk/forms/d/1vWLGXfbL1zAvUCrlJUewQ_CmICiIBCq3kTlNf_RCxss/viewform" title="Open in a new tab." target="blank"><u>Join Dementia Research Study Application Form</u></a><span style="font-size:1.2em;line-height:1.428571429;">.</span></p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion4" aria-controls="researchersAccordion4Body">What permissions does my study need?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion4Body" aria-labelledby="researchersAccordion4"> <p class="panel-body">To use Join Dementia Research you will need to ensure your study has the appropriate ethical approval from the NHS, Social Care or university. If you have not yet applied for ethics you will need to include a standard statement included on our <a href="https://docs.google.com/a/nihr.ac.uk/forms/d/1vWLGXfbL1zAvUCrlJUewQ_CmICiIBCq3kTlNf_RCxss/viewform" title="Open in a new tab." target="blank"><u>Join Dementia Research Study Application Form</u></a>.<br><br> If your study already has ethics approval, you will need the Chief Investigator to sign the file note amendment (template on our <a style="background-color:rgb(255, 255, 255);" href="https://docs.google.com/a/nihr.ac.uk/forms/d/1vWLGXfbL1zAvUCrlJUewQ_CmICiIBCq3kTlNf_RCxss/viewform" title="Open in a new tab." target="blank"><u>Join Dementia Research Study Application Form</u></a>). This is normally classified as a minor, non-notifiable amendment which should be attached to the Trial Master File and submitted with any other future changes. If you are unsure, check with your R&D Team.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion5" aria-controls="researchersAccordion5Body">How can I get a Join Dementia Research researcher user account?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion5Body" aria-labelledby="researchersAccordion5"> <p style="line-height:1.38;margin-bottom:0pt;margin-top:0pt;"><span style="font-family:Arial;font-size:11pt;font-variant-east-asian:normal;font-variant-numeric:normal;vertical-align:baseline;white-space:pre-wrap;" id="docs-internal-guid-7c20f8fc-7fff-1e4e-6c4d-8dad6bc2f4a3">If you are applying for your study to use Join Dementia Research, and do not have a JDR researcher user account, you will need to be trained to use Join Dementia Research. Here is the</span><a href="https://drive.google.com/file/d/19_HM-rwVFWTt6efc1oX5yQUYzLu-uN7g/view"><span style="font-family:Arial;font-size:11pt;font-variant-east-asian:normal;font-variant-numeric:normal;vertical-align:baseline;white-space:pre-wrap;" id="docs-internal-guid-7c20f8fc-7fff-1e4e-6c4d-8dad6bc2f4a3"> link</span></a><span style="font-family:Arial;font-size:11pt;font-variant-east-asian:normal;font-variant-numeric:normal;vertical-align:baseline;white-space:pre-wrap;" id="docs-internal-guid-7c20f8fc-7fff-1e4e-6c4d-8dad6bc2f4a3"> to the online training. Once you complete this training, you will complete an assessment and fill in a form, which will notify us to create your account. Once you have a research user account, your study can be added to Join Dementia Research, or alternatively, you can be added to an existing study on Join Dementia Research.</span></p> <p style="line-height:1.38;margin-bottom:0pt;margin-top:0pt;"><span style="font-family:Arial;font-size:11pt;font-variant-east-asian:normal;font-variant-numeric:normal;vertical-align:baseline;white-space:pre-wrap;" id="docs-internal-guid-7c20f8fc-7fff-1e4e-6c4d-8dad6bc2f4a3">If you do not have an NHS employment contract, your employer/institution will need to sign a ‘Data Sharing Agreement’ with ourselves. The Join Dementia Research office will contact you to discuss this, however, please note this can cause a minor delay.</span></p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion6" aria-controls="researchersAccordion6Body">Will I have to follow any rules / policies?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion6Body" aria-labelledby="researchersAccordion6"> <p>Yes. Access to Join Dementia Research is strictly controlled, and limited to approved researchers. As part of your training we will validate your identity, explain the rules and procedures and provide you with access to all appropriate usage policies. You will be expected to follow these policies at all times.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion7" aria-controls="researchersAccordion7Body">How long will it take before I can access volunteers' information?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion7Body" aria-labelledby="researchersAccordion7"> <p>This depends on when you apply, and if we need to set-up a Data Processing Agreement. You should normally expect this process to take two to eight weeks.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion8" aria-controls="researchersAccordion8Body">What type of information do I need to provide about my study?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion8Body" aria-labelledby="researchersAccordion8"> <p>If your study sits on the NIHR CRN Portfolio we will obtain information from the Study Protocol and Health Research Coordinated System for gaining NHS Permission (NIHR CSP). For all other studies, we will obtain this information from the <a href="https://docs.google.com/a/nihr.ac.uk/forms/d/1vWLGXfbL1zAvUCrlJUewQ_CmICiIBCq3kTlNf_RCxss/viewform" title="Open in a new tab." target="blank"><u>Join Dementia Research Study Application Form</u></a>. We will also ask you to supply a copy of your study’s volunteer information sheet and protocol.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion9" aria-controls="researchersAccordion9Body">Where will my study appear?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion9Body" aria-labelledby="researchersAccordion9"> <p>Your study will be accessible on the site to those volunteers who are matched to it.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion10" aria-controls="researchersAccordion10Body">Can I recruit for more than one study?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion10Body" aria-labelledby="researchersAccordion10"> <p>Yes. You can recruit for as many studies as you are involved in, as long as you are assigned to those studies within Join Dementia Research.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion11" aria-controls="researchersAccordion11Body">What kind of information will I see?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion11Body" aria-labelledby="researchersAccordion11"> <p>When a study is entered on Join Dementia Research, a ‘matching criteria’ is set e.g. diagnosis, location, age etc. The criteria options will be discussed to ensure that only appropriate volunteers are matched, within the scope of the dataset.<br><br> For recruitment access, an authorised researcher assigned to an approved study will see a list of matched potential volunteers. This will include their personal demographics (e.g. contact details and geographical area) and some basic medical information (such as diagnosis, medication etc.), which will help the service match the volunteer’s information to your study criteria.<br><br> The service will show that a potential volunteer is interested in your study. You will also be able to see whether a volunteer is involved in another study, and how they would like to be contacted (i.e. through email, by telephone etc.).<br><br> Each volunteer provides up to hundreds of pieces of information, some of this is used for matching, some to help you screen and some to help you contact them and understand their preferences. If you are interested in knowing the information requested in the volunteer sign up, you could sign yourself up as an a volunteer using your personal email address.<br><br> For feasibility access, you will see the number of Join Dementia Research potential volunteers in particular geographical areas including anonymised unidentifiable demographic data (e.g. age, diagnosis). This can be filtered according to the study criteria.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion12" aria-controls="researchersAccordion12Body">Can I update my study information?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion12Body" aria-labelledby="researchersAccordion12"> <p>Yes, your study information can be changed. To do this please contact us at <a href="mailto:research.jdr@nihr.ac.uk"><u>research.jdr@.nihr.ac.uk</u></a> or your NIHR <a href="https://www.nihr.ac.uk/documents/study-support-service-contacts/11921" title="Open in a new tab." target="blank"><u>local CRN</u></a>.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion13" aria-controls="researchersAccordion13Body">Once I have registered my study, will volunteers be able to see it?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion13Body" aria-labelledby="researchersAccordion13"> <p>Yes, once your study is opened on Join Dementia Research, volunteers who match your study criteria will be able to see your study information. However, only some information will be available for volunteers to view. This information includes the organisation or individual running the study, and a lay summary of the study to let volunteers know what is involved. The local site contact details or local researchers on the study will not be seen.</p> <p>Volunteers will also be able to indicate their interest in your study. If a volunteer indicates they are interested, you will be required to screen them within five working days.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion14" aria-controls="researchersAccordion14Body">Can I sign up to Join Dementia Research as a volunteer?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion14Body" aria-labelledby="researchersAccordion14"> <p>Yes. We encourage researchers to sign up as volunteers. If you would like to do this, please visit the <a href="https://www.joindementiaresearch.nihr.ac.uk/beginsignup"><u>volunteer sign up page</u></a>, however please note that you cannot register using the same email address you use for your researcher account.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion15" aria-controls="researchersAccordion15Body">How can I play a role in promoting the service?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion15Body" aria-labelledby="researchersAccordion15"> <p>We expect everyone who recruits volunteers from Join Dementia Research to play a role in promoting the service, and encouraging others to register. You can do this in many ways e.g. contributing to news stories, tweeting, telling your patients, family and friends. We try to include a news item on every new study that is added to Join Dementia Research, so be prepared to share or record a short film.<br><br> You can also download materials such as leaflets and posters by visiting <a href="http://news.joindementiaresearch.nihr.ac.uk/join-dementia-research-materials/"><u>http://news.joindementiaresearch.nihr.ac.uk/join-dementia-research-materials/</u></a>.</p> </div> </div> <div class="panel-default"> <h3 class="panel-title"><button class="accordionBtn" id="researchersAccordion16" aria-controls="researchersAccordion16Body">How should I credit Join Dementia Research in my research?</button></h3> <div class="panel-body accordionBody" hidden id="researchersAccordion16Body" aria-labelledby="researchersAccordion16"> <p>Researchers recruiting volunteers via Join Dementia Research are asked to credit the service for the support provided. Join Dementia Research is funded by the Department of Health and delivered by the National Institute for Health and Care Research in partnership with Alzheimer Scotland, Alzheimer's Research UK and Alzheimer's Society.</p> </div> </div> </div> </div> </article> </div> <!-- <aside class="col-md-4 greyBox"> </aside> --> <aside class="col-md-4"> <section class="usefulLinks"> <h4>Useful resources: </h4> <ul> <li><a href="http://docs.google.com/a/nihr.ac.uk/forms/d/1vWLGXfbL1zAvUCrlJUewQ_CmICiIBCq3kTlNf_RCxss/viewform" target="blank" title="Open in a new tab.">Application form</a></li> <li><a href="https://learn.nihr.ac.uk/course/view.php?id=359" target="blank" title="Open in a new tab.">Join Dementia Research researcher training</a></li> <li><a href="https://docs.google.com/document/d/1goRsprCoMHSJfRhyZBSVXCnifQzWEzco_tlHwYaPSmQ/edit?usp=sharing" target="blank" title="Open in a new tab.">Online researcher training instructions</a></li> <li><a href="http://news.joindementiaresearch.nihr.ac.uk/join-dementia-research-materials/" target="blank" title="Open in a new tab.">Order promotional materials</a></li> <li><a href="https://drive.google.com/file/d/18SO1pzfYFaZZB8jcwkbU9Or7UqYI8cQE/view?usp=sharing" target="blank" title="Open in a new tab.">Preparing a study</a></li> <li><a href="https://news.joindementiaresearch.nihr.ac.uk/terms-and-conditions-of-use-for-join-dementia-research/" target="blank" title="Open in a new tab.">Acceptable use policy for researchers</a></li> <li><a href="https://www.nihr.ac.uk/researchers/collaborations-services-and-support-for-your-research/run-your-study/crn-portfolio.htm" target="blank" title="Open in a new tab.">NIHR CRN Portfolio Info</a></li> <li><a href="https://www.nihr.ac.uk/documents/plain-english-summaries/27363">Writing a plain English summary</a></li> <li><a href="https://www.dementiaresearcher.nihr.ac.uk/">Early career researchers</a></li> </ul> </section> </aside> </section> </section> <div id="consentConfirmationModal" class="modal fade" role="dialog" tabindex="-1" aria-modal="true"> <div class="modal-dialog"> <!-- Modal content--> <div class="modal-content"> <div class="modal-header"> <button class="close-modal" data-dismiss="modal" aria-label="Close">×</button> <h2 class="modal-title">Important Note</h2> </div> <div class="modal-body"> <p>We can only register a volunteer with their consent, or the consent of someone who holds appropriate power of attorney for the volunteer.</p> <p>Does the volunteer you are registering consent themselves to signing up to Join Dementia Research?</p> <label class="radio-inline"><input id='consent_radio_no' type="radio" name="optradio1" checked>No</label> <label class="radio-inline"><input id='consent_radio_yes' type="radio" name="optradio1">Yes</label> </div> <div class="modal-footer"> <button class="btn btn-default btn-primary" onclick="consentModalFirstConfirm()">Confirm</button> </div> </div> </div> </div> <div id="consentFirstRejectedModal" class="modal fade" role="dialog" tabindex="-1" aria-modal="true"> <div class="modal-dialog"> <!-- Modal content--> <div class="modal-content"> <div class="modal-header"> <button class="close-modal" data-dismiss="modal" aria-label="Close">×</button> <h2 class="modal-title">Important Note</h2> </div> <fieldset aria-describedby="group-hint" class="modal-body"> <legend class="p">We can only register a volunteer with their consent, or the consent of someone who holds power of attorney. In England and Wales, this must be lasting power of attorney (LPA) on health and welfare grounds and in Scotland, Welfare Power of Attorney. Do you have consent or lasting power of attorney? </legend> <label for="consent_radio_no_second" class="radio-inline"><input id='consent_radio_no_second' type="radio" name="optradio2" checked>No</label> <label for="consent_radio_yes_second" class="radio-inline"><input id='consent_radio_yes_second' type="radio" name="optradio2">Yes</label> <p id="group-hint"><br/>We cannot accept consent on someone else's behalf for people living in Northern Ireland.</p> </fieldset> <div class="modal-footer"> <button class="btn btn-default btn-primary" onclick="consentModalSecondConfirm();">Confirm</button> </div> </div> </div> </div> <div id="consentSecondRejectedModal" class="modal fade" role="dialog" tabindex="-1" aria-modal="true"> <div class="modal-dialog"> <!-- Modal content--> <div class="modal-content"> <div class="modal-header"> <button class="close-modal" data-dismiss="modal" aria-label="Close">×</button> <h2 class="modal-title">Important Note</h2> </div> <div class="modal-body"> <p>As you do not have the volunteer's consent and do not hold an appropriate power of attorney for the volunteer, we are sorry but you are unable to register the volunteer.</p> <p><a href="https://www.joindementiaresearch.nihr.ac.uk/beginsignup">The volunteer can register themselves online</a> or they can talk to one of our charity helpdesks to confirm over the phone that they agree to be registered on Join Dementia Research and for you to be their representative. 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