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Dispelling myths about rare disease registry system development

Matthew Bellgard, Christophe Beroud, Kay Parkinson, Tess Harris, Segolene Ayme, Gareth Baynam, Tarun Weeramanthri, Hugh Dawkins, Adam Hunter
2013 Source Code for Biology and Medicine  
Rare disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare diseases.  ...  We dispel a number of myths in RDR development, outline key criteria for robust and sustainable RDR implementation and introduce the concept of a RDR Checklist to guide future RDR development.  ...  Dispelling rare disease registry development myths Myth 1: technology is not a stumbling block A commonly propagated message is that technical challenges are insignificant hurdles in the development of  ... 
doi:10.1186/1751-0473-8-21 pmid:24131574 pmcid:PMC4015362 fatcat:waniywidnzg3tca5gfi6ynmv6u

Correction: Dispelling myths about rare disease registry system development

Matthew Bellgard, Christophe Beroud, Kay Parkinson, Tess Harris, Segolene Ayme, Gareth Baynam, Tarun Weeramanthri, Hugh Dawkins, Adam Hunter
2014 Source Code for Biology and Medicine  
, biobanks and clinical bioinformatics for rare disease research.  ...  The authors wish to acknowledge their involvement in the International Rare Disease Research Consortium.  ...  Correction: Dispelling myths about rare disease registry system development Matthew Bellgard 1* , Christophe Beroud 2,3 , Kay Parkinson 4 , Tess Harris 5 , Segolene Ayme 6 , Gareth Baynam 7,8,9 , Tarun  ... 
doi:10.1186/1751-0473-9-4 pmid:24484969 pmcid:PMC3917533 fatcat:vmewfreuurckxhch65utwibcoi

Improving Adult Vaccination Status in the United States

R. Burciaga Valdez, Korazon S. Romero
2021 Healthcare  
Participate in your state's immunization registry and work with community organizations that can help make adult immunization the norm.  ...  Myths are plentiful causing fear about vaccination rather than the serious diseases they can help control.  ...  Dispelling vaccine myths requires public education and shared decision making, which may include repeated screenings and discussions.  ... 
doi:10.3390/healthcare9111411 pmid:34828459 pmcid:PMC8620051 fatcat:cxzclu2t3rft3pya23pybzj27m

Health effects of the Chernobyl accident: fears, rumours and the truth

Mati Rahu
2003 European Journal of Cancer  
The scope of the accident, Soviet secrecy about it, and the lack of general awareness of, or disregard for, the effects of radiation created a fertile ground for persistent fears and rumours attributing  ...  These studies are very dependent on the quality of the disease registries, particularly cancer registries and mortality registries.  ...  Some say that the UNSCEAR 2000 Report has dispelled the myth of huge health risks after Chernobyl; others [34] state that ''the accent put in the Report agrees with atomic lobby interests'' and contains  ... 
doi:10.1016/s0959-8049(02)00764-5 pmid:12565980 fatcat:6wg7uscgffbyvht272bloebbxa

"Registries are not only a tool for data collection they are for action": Cancer registration and gaps in data for health equity in six population‐based registries in India

Amiya Bhatia, Cesar Gomes Victora, Jason Beckfield, Atul Budukh, Nancy Krieger
2020 International Journal of Cancer  
In India, population-based cancer registries (PBCRs) cover less than 15% of the urban and 1% of the rural population.  ...  Data on education, marital status, mother tongue and religion were collected, but rarely reported. Two PBCRs collected information on income and occupation and none collected information on caste.  ...  Acknowledgements We thank the staff in each of the cancer registries included in this study for so generously participating in interviews and making this study possible.  ... 
doi:10.1002/ijc.33391 pmid:33186475 fatcat:j5suhvbbrvdmlnfmbvqbczrv6u

Building and Sustaining a Community Advisory Board of African American Older Adults as the Foundation for Volunteer Research Recruitment and Retention in Health Sciences

Jamie Mitchell, Tam Perry, Vanessa Rorai, Joan Ilardo, Peter Lichtenberg, James Jackson
2020 Ethnicity & Disease  
CAB members develop and support community health programming that provides free resources to older adults and also serves as fertile ground for recruiting participants in a volunteer research registry.  ...  CABs often comprise trusted and well-connected community stakeholders who are invested in sharing the benefits of research participation and dispelling research-related myths among their various peer,  ...  2 The root causes of these health disparities are multi-faceted and systemic  ... 
doi:10.18865/ed.30.s2.755 pmid:33250622 pmcid:PMC7683030 fatcat:miiireffnvh7vfmxwpkrjnox5y

Clear up this stem-cell mess

Douglas Sipp, Pamela G. Robey, Leigh Turner
2018 Nature  
Scanning electron micrograph of what is called a human mesenchymal stem cell, which some say can develop into bone, cartilage or fat cells. 2 7 S E P T E M B E R 2 0 1 8 | V O L 5 6 1 | N A T U R E | 4  ...  DISPEL THE MSC MYTH Meanwhile, the community needs to stop subsuming multiple cell types under one catch-all phrase.  ...  Contradictory findings about these haphazardly termed 'mesenchymal stem cells', including their origins, developmental potential, biological functions and possible therapeutic uses, have prompted biologists  ... 
doi:10.1038/d41586-018-06756-9 pmid:30258150 fatcat:iayj5ap475bobotp2xkprkz4ye

Palliative Care in Colorectal Cancer [chapter]

Ricardo Caponero
2020 Colorectal Cancer [Working Title]  
Approximately 25% of patients present with liver metastases at the time of the first diagnosis and up to 50% will further develop recurrence in the liver during their disease course.  ...  We need to change reality and dispel myths and prejudices in relation to palliative care to improve the quality of life between cancer diagnosis and death.  ...  Today, the median overall survival for patients with metastatic colorectal cancer being treated both in phase III trials and in large observational series or registries is about 30 months and is more than  ... 
doi:10.5772/intechopen.93513 fatcat:gis6hu3syzfqlpceormuu7o774

Thromboembolism and the Oxford–AstraZeneca COVID-19 vaccine: side-effect or coincidence?

Søren Dinesen Østergaard, Morten Schmidt, Erzsébet Horváth-Puhó, Reimar Wernich Thomsen, Henrik Toft Sørensen
2021 The Lancet  
Religious leaders should use Friday prayer sermons to promote the acceptance of vaccines, dispelling myths with worshippers.  ...  , 6 in which all hospital contacts are registered in the Danish National Patient Registry. 7 We first used the Danish Civil Registration System 6 to identify all Danes who were at least 18 years old  ... 
doi:10.1016/s0140-6736(21)00762-5 pmid:33798498 fatcat:bhva4doei5e27lo6mbvitoco6e

Dispelling misconceptions in the management of familial adenomatous polyposis

Timothy J. Chittleborough, Satish K. Warrier, Alexander G. Heriot, Matthew Kalady, James Church
2017 ANZ journal of surgery  
This article aims to dispel misconceptions in the diagnosis and treatment of patients with familial adenomatous polyposis (FAP).  ...  Because FAP is such a rare disease, the experience of individual surgeons may be skewed by unusual presentations and outcomes.  ...  of DT in FAP. 28, 32, 33 E ayi et al have described a scoring system to help identify such high-risk patients. 34 For patients that are prone to develop desmoids, it may be prudent to delay surgery  ... 
doi:10.1111/ans.13919 pmid:28266097 fatcat:tm2fxp5nsfc45dujqjheyikxxa

Organ Donation After Circulatory Death

Barbara G. Jericho
2018 Anesthesia and Analgesia  
This paper is a call to action for those who influence, develop or carry out policies that will lead the way to resolution of the identified issues.  ...  Through the creation of volunteer community programs and engagement of local churches and other community groups, MOTTEP has been able to dispel myths and concerns that people have about organ donation  ...  • Educate all hospital leaders and staff on organ donation practices to dispel myths and inspire enthusiasm.  ... 
doi:10.1213/ane.0000000000003448 pmid:29787408 fatcat:rmkzxsgpfff3pbjksios7kakte

An Opportunity to Understand Concerns about COVID-19 Vaccination: Perspectives from EMS Professionals

Sarah R. MacEwan, Alice A. Gaughan, Megan E. Gregory, Laura J. Rush, Jonathan R. Powell, Jordan D. Kurth, Ashish R. Panchal, Ann Scheck McAlearney
2022 Vaccines  
Unvaccinated individuals also expressed concerns over the research and development of the COVID-19 vaccines that led to their decision not to get vaccinated.  ...  Some healthcare professionals, including emergency medical service (EMS) professionals, remain hesitant about receiving COVID-19 vaccines.  ...  Vaccines 2022, 10, 380 6 of 12 Perspectives about Vaccine Development Perspectives about vaccine development were also divided.  ... 
doi:10.3390/vaccines10030380 pmid:35335012 pmcid:PMC8950335 fatcat:5beezl3ginft3pd72cxwmpdvfu

Fibromuscular Dysplasia: State of the Science and Critical Unanswered Questions: A Scientific Statement From the American Heart Association

J. W. Olin, H. L. Gornik, J. M. Bacharach, J. Biller, L. J. Fine, B. H. Gray, W. A. Gray, R. Gupta, N. M. Hamburg, B. T. Katzen, R. A. Lookstein, A. B. Lumsden (+4 others)
2014 Circulation  
myths about this disease that continue to be taught in medical schools and during postgraduate education.  ...  for Fibromuscular Dysplasia (US Registry) were reported several months after the European Consensus document. 5 These recent publications have added new information about FMD and dispelled some of the  ... 
doi:10.1161/01.cir.0000442577.96802.8c pmid:24548843 fatcat:st5ovysbo5eoxkd4vuzp2ndmxu

Targeting COVID-19 Vaccine Hesitancy in Minority Populations in the US: Implications for Herd Immunity

James E. K. Hildreth, Donald J. Alcendor
2021 Vaccines  
This information is crucial for educating these communities about COVID-19 vaccines and their distribution as well as dispelling misinformation regarding vaccine trials, safety, and efficacy.  ...  of the healthcare system among these communities for decades.  ...  There is an urgent need for public figures and role models in communities of H/L to help dispel misinformation, misperceptions, conspiracy theories, and myths about COVID-19 and COVID-19 vaccines.  ... 
doi:10.3390/vaccines9050489 pmid:34064726 pmcid:PMC8151325 fatcat:wddhegwc7vh53bcby6apk6by7i
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