1998 lines
57 KiB
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1998 lines
57 KiB
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<a class="gtm-topnav-drop" href="/news-events/videos"><span>Videos</span></a>
|
||
</li>
|
||
</ul>
|
||
</li>
|
||
|
||
</ul>
|
||
|
||
|
||
<ul class="aria-menu menu ml-auto nav navbar-nav d-lg-none" style="padding-bottom: 0px;">
|
||
<li class="nav-item">
|
||
<a class="gtm-topnav nav-link ext" href="https://participant.joinallofus.org/ParticipantPortal/s/login/?language=en" rel="noopener nofollow noreferrer">
|
||
Log In
|
||
</a>
|
||
</li>
|
||
</ul>
|
||
</div>
|
||
|
||
</div>
|
||
</div>
|
||
|
||
|
||
</div>
|
||
</div>
|
||
</div>
|
||
</nav>
|
||
|
||
|
||
</header>
|
||
|
||
<div class="layout-container">
|
||
|
||
|
||
<div class="d-block d-sm-none mobileShow">
|
||
<a href="https://participant.joinallofus.org/ParticipantPortal/s/login/SelfRegister?language=en" target="_blank" class="btn btn-sub">
|
||
Join Now
|
||
</a>
|
||
</div>
|
||
|
||
<div>
|
||
<div data-drupal-messages-fallback class="hidden"></div>
|
||
|
||
</div>
|
||
|
||
|
||
<main class="page" role="main">
|
||
|
||
<a id="main-content" tabindex="-1"></a>
|
||
<div>
|
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<div id="block-particle-breadcrumbs">
|
||
|
||
|
||
|
||
|
||
<div class="container">
|
||
<div class="row">
|
||
<nav aria-label="breadcrumb" role="navigation" aria-label="Breadcrumb">
|
||
<ol id="breadcrumb" class="aou-breadcrumb breadcrumb">
|
||
<li class="breadcrumb-item">
|
||
<a href="/">All of Us</a>
|
||
</li>
|
||
<li class="breadcrumb-item">
|
||
<a href="/about">About</a>
|
||
</li>
|
||
<li class="breadcrumb-item active is-active" aria-current="page">FAQ</li>
|
||
</ol>
|
||
</nav>
|
||
|
||
</div>
|
||
</div>
|
||
|
||
|
||
</div>
|
||
|
||
</div>
|
||
|
||
<div class="container alt-lang-link text-right">
|
||
</div>
|
||
|
||
<div class="layout-content no-gutters container-fluid">
|
||
<div class="container">
|
||
<div class="row">
|
||
<div class="col">
|
||
<h1 class="page-title">FAQ</h1>
|
||
</div>
|
||
</div>
|
||
</div>
|
||
<div>
|
||
<div id="block-particle-content">
|
||
|
||
|
||
<article data-history-node-id="37" about="/about/faq" typeof="schema:WebPage">
|
||
|
||
|
||
<span property="schema:name" content="FAQ" class="hidden"></span>
|
||
|
||
|
||
|
||
<div>
|
||
|
||
<div>
|
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|
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|
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|
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|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="p-0 container">
|
||
<div class="pattern">
|
||
|
||
|
||
<div id="accordion_107" class="card-body accordion-panel">
|
||
|
||
<div class="container-collapse-toggle text-center ">
|
||
<button class="btn btn-primary container-button-toggleAll gtm-accordion-open-all open" type="button" data-allclosed="true" data-target=".multi-collapse" aria-expanded="false" aria-label="open all">
|
||
<span class="button-toggle-label gtm-accordion-all">
|
||
<span class="button-toggle-sign"></span>
|
||
</span>
|
||
</button>
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-1" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-1" aria-expanded="false" aria-controls="collapse-107-1">
|
||
|
||
What is the All of Us Research Program?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-107-1" class="collapse multi-collapse " aria-labelledby="heading-1">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p>The <em>All of Us</em> Research Program is part of an effort to advance individualized health care by enrolling one million or more participants to contribute their health data over many years. The program aims to reflect the diversity of the United States and to include participants from groups that have been underrepresented in health research in the past. The program is developing custom tools and software to help researchers analyze participant data while keeping information secure. Working together, <em>All of Us</em> researchers, partners, and participants aim to build a better future for health care. Learn more <a href="https://allofus.nih.gov/about/all-us-research-program-overview">about <em>All of Us</em></a><em>.</em></p>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-2" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-2" aria-expanded="false" aria-controls="collapse-107-2">
|
||
|
||
What is the goal of the All of Us Research Program?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-107-2" class="collapse multi-collapse " aria-labelledby="heading-2">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p>The goal of <em>All of Us</em> is to speed up health research discoveries, enabling new kinds of individualized health care. To make this possible, the program is building one of the world’s largest and most diverse databases for health research.</p>
|
||
<p>By working with participants across the country, collecting many types of information over time, and building a data platform that many researchers can use, <em>All of Us</em> may also shape how people do research in the future.</p>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-3" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-3" aria-expanded="false" aria-controls="collapse-107-3">
|
||
|
||
Which diseases will the All of Us Research Program study?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-107-3" class="collapse multi-collapse " aria-labelledby="heading-3">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p>Unlike research studies that focus on one disease or group of people, <em>All of Us</em> is building a database that can inform thousands of studies on a variety of important health questions. Researchers have found success in using precision medicine to treat certain types of cancers. <em>All of Us</em> seeks to extend that success to many other diseases. Importantly, <em>All of Us</em> may enable research focused not only on treating disease but also on ways to be healthier.</p>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-4" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-4" aria-expanded="false" aria-controls="collapse-107-4">
|
||
|
||
How long until we see the results of the All of Us Research Program in the form of new ways to prevent and treat disease?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-107-4" class="collapse multi-collapse " aria-labelledby="heading-4">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p>Researchers have seen some progress with precision medicine, which is health care that is based on you as an individual. But it can take many years to understand how a unique variable is linked to a disease or treatment. It takes even more time to develop new ways to prevent and treat disease. By creating a program of the size and scope of <em>All of Us</em><em>,</em> we hope to speed up these medical breakthroughs.</p>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-5" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-5" aria-expanded="false" aria-controls="collapse-107-5">
|
||
|
||
Where can I find materials about the program to share?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-107-5" class="collapse multi-collapse " aria-labelledby="heading-5">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p><em>All of Us</em> offers free, downloadable materials to help you spread the word about the program. See our <a href="/news-and-events/press-kit/all-us-multimedia">Multimedia</a> page.</p>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-6" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-6" aria-expanded="false" aria-controls="collapse-107-6">
|
||
|
||
Who can I contact if I have more questions?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-107-6" class="collapse multi-collapse " aria-labelledby="heading-6">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p>Reach out to <em>All of Us</em> through our <a href="/about/contact-us">Contact Us</a> page.</p>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-7" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-7" aria-expanded="false" aria-controls="collapse-107-7">
|
||
|
||
Can anyone join?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-107-7" class="collapse multi-collapse " aria-labelledby="heading-7">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p>Yes. All eligible people, living anywhere in the United States, can join.</p>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-8" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-107-8" aria-expanded="false" aria-controls="collapse-107-8">
|
||
|
||
Does the program accept children?
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
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<p><em>All of Us</em> enrolled a small number of children at the end of 2023 in an initial phase to check systems and processes. After a review of this initial phase, we will begin broader enrollment of children from birth through four years of age at a few of our partner sites. In the future, we will expand to additional sites across the country and gradually open enrollment to older children.</p>
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Has the program consulted tribal leaders?
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<p>Yes. We respect that tribes are sovereign and diverse nations, with their own governments and laws. We are committed to engaging with tribal leaders and members across the country to understand their opinions and concerns. This helps us better support research in a way that protects and benefits participants and their American Indian and Alaska Native communities. <a href="/about/diversity-and-inclusion/all-us-tribal-engagement">Learn more about the <em>All of Us</em> Research Program’s work with Tribal Nations</a>.</p>
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How do I sign up to join the All of Us Research Program?
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<p>You can join directly through <a href="http://joinallofus.org/">JoinAllofUs.org</a> or with participating health care provider organizations. Read an overview of <a href="https://www.joinallofus.org/what-participants-share">how to join</a>.</p>
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Why should I join?
|
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<p>People join for many reasons. You might join to:</p>
|
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<ul>
|
||
<li>Learn more about your health, including your DNA. This will include, for example, information about genetic traits and ancestry, potential increased risk of developing certain diseases, or how your body might react to certain medicines.</li>
|
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<li>Help improve the health of your communities and future generations.</li>
|
||
<li>Help researchers find the best ways for people to stay healthy.</li>
|
||
<li>Help researchers one day create better tests and treatments.</li>
|
||
</ul>
|
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<p>The longer you stay involved with <em>All of Us</em>, the more you can learn about yourself and help speed up health research and medical breakthroughs.</p>
|
||
<p><a href="https://www.joinallofus.org/genomics">Learn more about <em>All of Us</em> and DNA</a></p>
|
||
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|
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What will be expected of me if I join the All of Us Research Program?
|
||
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<p>If you decide to join <em>All of Us,</em> we will ask you to share <a href="https://www.joinallofus.org/en/what-you-would-need-to-do">different kinds of information over time</a>. We will ask you basic information like your name and where you live. We will ask you questions about your health, family, home, and work. If you have an electronic health record, we may ask for access. We may ask you to go to a local clinic or drug store for a free appointment with us. At this appointment, we would measure your weight, height, hips, and waist, as well as your blood pressure and heart rate. We might ask you to give samples, such as blood or urine, at the appointment.</p>
|
||
<p>You will be able to choose how frequently we contact you. From time to time, we may send you new surveys or offer other ways for you to share information about your health.</p>
|
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|
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|
||
|
||
Will my health information be secure? How do you plan to ensure privacy?
|
||
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<p><em>All of Us </em>is <a href="/protecting-data-and-privacy">committed</a> to making sure data are kept private. We also want to make sure that data are not misused. The <em>All of Us</em> Research Program:</p>
|
||
<ul>
|
||
<li>Follows all federal, state, and local laws and rules for keeping data safe</li>
|
||
<li>Has strict policies and procedures to prevent misuse of data. See the <a href="/protecting-data-and-privacy/precision-medicine-initiative-privacy-and-trust-principles">Privacy and Trust Principles</a> and <a href="/protecting-data-and-privacy/precision-medicine-initiative-data-security-policy-principles-and-framework-overview">Data Security Policy Principles and Framework</a>.</li>
|
||
<li>Has <a href="https://humansubjects.nih.gov/coc/index">Certificates of Confidentiality</a> from the U.S. government. These will help the program fight legal demands (such as a subpoena) to give out information that could identify a participant.</li>
|
||
<li>Continues to test the security of our databases</li>
|
||
<li>Will tell participants if there is a risk to their privacy because of a data breach</li>
|
||
<li>Stores data on protected computers. This keeps track of and limits who can see it.</li>
|
||
<li>Removes personal details that could identify participants from the data</li>
|
||
<li>Requires researchers to agree to follow data use rules, including promising they will not try to identify participants</li>
|
||
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|
||
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||
|
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|
||
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|
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|
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Who can see the information I give to the All of Us Research Program?
|
||
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<p>We will create a <a href="https://www.researchallofus.org/" target="_blank">database</a> on the <em>All of Us </em>Research Program website. Everyone can use this database to make discoveries. There are different levels of access. Some information is visible to the public. Some information can only be seen by approved researchers. The information in the database that anyone can see will be about the group of participants. For example, it might tell the average age of the people who have joined the <em>All of Us</em> Research Program. It will not include information about individual people.</p>
|
||
<p>Only researchers approved by the <em>All of Us</em> Research Program will be allowed to see data from individual participants. The data will not include your name or other information that directly identifies you. These researchers may be from anywhere in the world. They may work for commercial companies, like drug companies. The research may be on many different topics.</p>
|
||
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|
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|
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|
||
What funding opportunities are available for researchers?
|
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|
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|
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|
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|
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<p>Visit the <a href="/funding-and-program-partners">Funding and Partners</a> page for details on funded projects, current and past funding opportunities, and relevant policy information.</p>
|
||
|
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|
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|
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|
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|
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What makes this program different from other research programs, cohorts, or biobanks?
|
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|
||
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||
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|
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|
||
<p>While many programs share one or two characteristics of <em>All of Us</em>, it is the combination of all the elements below that makes <em>All of Us</em> a unique and unprecedented research effort:</p>
|
||
<p>• Our participants reflect the rich diversity of America, including volunteers of many races and ethnicities, age groups, geographic regions, gender identities, sexual orientations, and health statuses. We aim to enroll one million or more participants over the course of the program.</p>
|
||
<p>• With <em>All of Us</em>, participants are true partners—not subjects, with ongoing opportunities to help shape the program with their input. Further, information is shared with both researchers and participants. </p>
|
||
<p>• As a government-funded program committed to open data and science, <em>All of Us </em>makes data broadly accessible to researchers of all kinds to support thousands of studies across a wide range of different health topics.</p>
|
||
<p>• Other large research programs collect limited types of samples or data, often focused on a specific disease. <em>All of Us</em> gathers blood, urine, and saliva samples; physical measurements; electronic health records; survey information about participants’ health histories, family medical histories, lifestyles, and communities; and wearable data to get a more complete picture of human health across many conditions.</p>
|
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How is the program funded?
|
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<p>The <em>All of Us</em> Research Program is publicly funded, with resources appropriated each year by the U.S. Congress. The 21st Century Cures Act, passed in December 2016, authorized a total of $1.5 billion over ten years for the program. These funds, in addition to discretionary appropriations the program receives, are subject to the annual appropriations process.</p>
|
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<span><strong>Last Reviewed: </strong>December 13, 2023</span>
|
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