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<div class='syndicate'><h1>List of Registries</h1><div><div class="callout">
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<div class="collapsible">
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<h3 class="collapsible-trigger">Frequently Asked Questions</h3>
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<div class="collapsible-content">
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<p class="collapsible-trigger"><em>What is a registry?</em></p>
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<div class="collapsible-content">
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<p>A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. Many registries collect information about people who have a specific disease or condition, while others seek participants of varying health status who may be willing to participate in research about a particular disease. Individuals provide information about themselves to these registries on a voluntary basis. Registries can be sponsored by a government agency, nonprofit organization, health care facility, or private company. It’s always good to check first to know who sponsors the registry – or – look for information on a registry’s site to know about their sponsor(s).</p>
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</div>
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<p class="collapsible-trigger"><em>Why are registries needed?</em></p>
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<div class="collapsible-content">
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||
<p>Registries can provide health care professionals and researchers with first-hand information about people with certain conditions, both individually and as a group, and over time, to increase our understanding of that condition. Some registries collect information that can be used to track trends about the number of people with diseases, treatments, and more. Other registries invite people to sign up to be contacted about participating in clinical research. These ask very basic questions about health history that would help determine whether someone is possibly eligible to join a research study.</p>
|
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</div>
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||
<p class="collapsible-trigger"><em>It sounds like these registries collect personal health information. Is there a risk that such information could be disclosed?</em></p>
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<div class="collapsible-content">
|
||
<p>Government agencies have strict privacy requirements set by law such as the Federal Information Security Management Act (FISMA), and the Health Insurance Portability and Accountability Act (HIPAA). If registries have followed all of these rules, the likelihood of identifiable personal information being shared is very small.</p>
|
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</div>
|
||
|
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<p class="collapsible-trigger"><em>What benefits will someone receive from participating in a registry?</em></p>
|
||
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||
<div class="collapsible-content">
|
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<p>Participation in a registry is likely to increase what we know about a specific condition, help health care professionals improve treatment, and allow researchers to design better studies on a particular condition, including development and testing of new treatments. Being part of a clinical trials registry can help people interested in participating in research connect with clinical investigators. However, individuals (and their families) who choose to participate in a registry should understand that participation will not guarantee a treatment or cure for their condition or that they will be eligible to join a study.</p>
|
||
</div>
|
||
|
||
<p class="collapsible-trigger"><em>Who has access to the information in a registry?</em></p>
|
||
|
||
<div class="collapsible-content">
|
||
<p>Usually, a federally-funded registry has a very limited list of individuals (registry coordinator) who may have access to participants’ personal, identifying information. ;Those individuals must be specially trained and certified regarding information security requirements.</p>
|
||
</div>
|
||
|
||
<p class="collapsible-trigger"><em>Who owns the data from a registry? Who makes decisions about how these data will be used?</em></p>
|
||
|
||
<div class="collapsible-content">
|
||
<p>The data collected in a disease registry is stripped of personal information. It belongs to the sponsor of the registry, and depending on how the registry is set up, may be shared with the participants and their families, and approved health care professionals and researchers. However, personal, identifying information is kept private. Usually, a registry has a governing committee that makes decisions about how the data can be used or shared.</p>
|
||
</div>
|
||
|
||
<p class="collapsible-trigger"><em>Can a participant withdraw from the registry?</em></p>
|
||
|
||
<div class="collapsible-content">
|
||
<p>Yes. Registries are free and voluntary; there is no penalty for choosing to withdraw at any point.</p>
|
||
</div>
|
||
|
||
<p class="collapsible-trigger"><em>Who should the participant contact with additional questions or concerns?</em></p>
|
||
|
||
<div class="collapsible-content">
|
||
<p>For any questions about participation or any issues that may arise, registries provide a contact, usually the registry coordinator.</p>
|
||
</div>
|
||
|
||
<p class="collapsible-trigger"><em>How is a registry different from a clinical trial?</em></p>
|
||
|
||
<div class="collapsible-content">
|
||
<p>Registries focused on specific diseases or conditions collect information voluntarily from people with those conditions. Clinical trials registries collect basic health information from people who agree to be contacted about participating in future clinical trials or studies.</p>
|
||
|
||
<p>A clinical trial is the study of new ways to prevent, detect or treat diseases or conditions. Volunteering for a registry does not mean a person has signed up for a clinical trial. Participation in a disease registry can sometimes become a first step toward participation in a clinical trial, but registries and specific trials are not directly linked.</p>
|
||
</div>
|
||
</div>
|
||
</div>
|
||
</div>
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||
|
||
<p><strong>Disclaimer:</strong> The following listing is not intended to be comprehensive, and the inclusion of any particular organization on this list does not imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information about registry efforts at the national level and therefore have not included many local groups that can offer valuable assistance to individuals and their families within a limited geographic area.</p>
|
||
|
||
<div class="teaser-list teaser-list-no-grid teaser-list-no-thumbnails teaser-list-with-rules">
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.endalznow.org/">Alzheimer’s Prevention Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.autoimmuneregistry.org">Autoimmune Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.aarda.org/who-we-help/patients/arnet/">Autoimmune Research Network (ARNet)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://sites.rutgers.edu/mulle/join-3q29-registry/">3q29 Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.bcsc-research.org/">Breast Cancer Surveillance Consortium</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.cancergen.org/">Cancer Genetics Network</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://thefhfoundation.org/cascade-fh-registry-clinical?gclid=EAIaIQobChMIn5umuOLJ3AIVBRxpCh2kCgXLEAAYASAAEgLCBfD_BwE">CASCADE FH Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://cchsnetwork.org/one-world-registry/">CCHS Now Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://cprn.org/mycp/">Cerebral Palsy Research Network MyCP</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://project8p.org/step-1-chromosome-8p-registry-biorepository/">Chromosome 8p Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://datashare.nida.nih.gov/">Clinical Trials Public Data Share Website</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.citregistry.org/">Collaborative Islet Transplant Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.coloncfr.org/">Colon Cancer Family Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://benchtobassinet.com/?page_id=133">Congenital Heart Disease Genetic Network Study (CHD GENES)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.cmdir.org">Congenital Muscle Disease International Registry (CMDIR)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://creatineinfo.iamrare.org/">CreatineInfo Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://curertd.org/">Cure RTD Foundation</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://curedrpla.org/en/global-patient-registry">CureDRPLA Global Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.cff.org/Research/Researcher-Resources/Patient-Registry/">Cystic Fibrosis Foundation Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://dianexr.org">Dominantly Inherited Alzheimer Network (DIAN) — Expanded Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.dilin.org">Drug Inducted Liver Injury Network (DILIN)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://dsconnect.nih.gov">DS-Connect™: The Down Syndrome Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://dtrf.iamrare.org">DTRF Desmoid Tumor Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://eheregistry.iamrare.org">Epithelioid Hemangioendothelioma (EHE) Global Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://eyegene.nih.gov">eyeGENE<sup>®</sup>: The National Ophthalmic Disease Genotyping and Phenotyping Network</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://fanconiregistry.iamrare.org/">Fanconi Anemia Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.fdmasregistry.org">FD/MAS Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://clinicaltrials.gov/ct2/show/study/NCT03325855">Fecal Microbiota Transplant National Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.fmdsa.org/research_network/fmd_registry">Fibromuscular Dysplasia (FMD) Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.fightingblindness.org/my-retina-tracker-registry">Foundation Fighting Blindness</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://fsr-sarc.patientcrossroads.org">Foundation for Sarcoidosis Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://ftdregistry.org">Frontotemporal Degeneration (FTD) Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.clinicalgenome.org">GenomeConnect</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://rare-x.org/rare-disease-communities/">Global Genes RARE-X Patient Communities</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://pnh.iamrare.org/">The Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry (iamrare.org)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://pwsregistry.iamrare.org/">Global Prader-Willi Syndrome Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.hnf-cure.org/registry/">Global Registry for Inherited Neuropathies (GRIN) Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://cvquality.acc.org/NCDR-Home/registries/hospital-registries/impact-registry">IMPACT Registry, diagnostic and interventional cardiac catheterization in congenital heart disease</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://marrowfailure.cancer.gov/index.html">Inherited bone marrow failure syndrome</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://corona.pregistry.com">International Registry of Coronavirus Exposure in Pregnancy (IRCEP)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.wernersyndrome.org/registry/registry.html">International Registry of Werner Syndrome</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://itpstudy.iamrare.org/">ITP Natural History Study Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://kcnt1epilepsy.org/registry-information">KCNT1 Epilepsy</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://krabbecures.iamrare.org/">Krabbe Community United Research and Engagement Study (KrabbeCURES)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.curemito.org/leighsyndromeregistry">Leigh Syndrome Global Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.lipedema.org/registry">Lipedema Foundation</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://ordrcc.omrf.org">Lupus Family Registry and Repository</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://monogenicdiabetes.uchicago.edu">Monogenic Diabetes at the University of Chicago</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://mothertobaby.org/news-press/mothertobaby-president-launches-first-covid-19-in-pregnancy-study/">Mother to Baby</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://mmrfcurecloud.org/">Multiple Myeloma Research Foundation’s (MMRF) CureCloud</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.mgregistry.org">Myasthenia Gravis Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.mylymedata.org/">MyLymeData</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.icpsr.umich.edu/icpsrweb/NAHDAP/">National Addiction & HIV Data Archive Program</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.cdc.gov/als/">National ALS Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://epi.grants.cancer.gov/registries.html">National and State Cancer Registries</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://npcqic.org/">National Pediatric Cardiology Quality Improvement Collaborative</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://biolincc.nhlbi.nih.gov/studies/gentac/">National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.drugabuse.gov/researchers/research-resources/genetics-research-resources/nida-genetics-study-center-biorepository">NIDA Center for Genetics Research</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://grants.nih.gov/stem_cells/registry/current.htm">NIH Human Embryonic Stem Cell Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://www.urmc.rochester.edu/neurology/national-registry/">NIH National Registry of U.S. Myotonic Dystrophy and U.S. Facioscapulohumeral Muscular Dystrophy (FSHD)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://oaaregistry.iamrare.org">OAA Natural History Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://pc4quality.org/">Pediatric Cardiac Critical Care Consortium (PC4)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://pku.iamrare.org/">PKU Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://clinicaltrials.gov/ct2/show/NCT02997345">PPROM Registry (Preterm Premature Rupture of Membranes)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://pregsource.nih.gov">PregSource<sup>®</sup>: Crowdsourcing to Understand Pregnancy</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://preeclampsiaregistry.org/">The Preeclampsia Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://priority.ucsf.edu">PRIORITY (Pregnancy CoRonavIrus Outcomes RegIsTrY)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.pulmonaryfibrosis.org/pff-registry/home">Pulmonary Fibrosis</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://ncats.nih.gov/radar">Rare Diseases Registry Program (RaDaR)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.lupus.org/RAY">RAY: Research Accelerated by You</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://services.aap.org/en/community/aap-sections/sonpm/">Section on Neonatal-Perinatal Medicine (SONPM)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="http://seer.cancer.gov/registries/">SEER registries</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.scnir.org/">Severe Chronic Neutropenia International Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.komen.org/shareforcures/">ShareForCures (breast cancer research registry by Susan G. Komen)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.simonssearchlight.org/">Simons Searchlight (rare genetic neurodevelopmental disorders registry)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.sts.org/registries-research-center/sts-national-database/sts-congenital-heart-surgery-database">Society for Thoracic Surgeons Society, Congenital Heart Surgery Database</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://syngap1registry.iamrare.org">SYNGAP1 (MRD5) Patient Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://tbrsregistry.iamrare.org">Tatton Brown Rahman Syndrome (TBRS)</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.usher-registry.org">Usher Syndrome Registry</a></h4>
|
||
</div>
|
||
|
||
<div class="teaser">
|
||
<h4 class="teaser-title"><a href="https://www.myvps.org">Virtual Pediatric Systems (VPS)</a></h4>
|
||
</div>
|
||
</div>
|
||
</div></div>
|
||
|
||
</div>
|
||
|
||
<div class="lastupdated">
|
||
<p>This page last reviewed on January 6, 2025</p> </div> </div>
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