How can you help our CDG community? Is easy! Share among your social media and other channels the information we make available within this section and website. This raises awareness, accelerates diagnosis, and secures better care and management for our CDG children and adults!
What to look for before trusting a website with CDG information and resources?
Since anyone can construct a website, there is no "gatekeeper" to verify online health information and resources. Trusting information isn't always easy. As the access to health research and evidence expands, so do the chances of misinterpreting it and getting a complete and balanced picture. Also, take into consideration that CDG health information evolves. Researchers constantly learn about CDG.
With a bit of detective work, you can find the information you can trust. Please consider the following tips:
- Search for reputable well-known health institutions. Online health material is commonly provided by medical schools, health groups, patient groups and hospitals.
- Look for ".gov," ".edu," or ".org", “.europa.eu”:
- ".gov" sites are government-run
- ".edu" represents a school, college, or university
- ".org" usually identifies nonprofit organizations (such as professional groups; scientific, medical, or research societies; advocacy groups)
- ".com" indicates a for-profit site (such as businesses, pharmaceutical companies, and sometimes hospitals). It may have good info, yet may be biased
- ". europa.eu” all official European Union website addresses are in the europa.eu domain.
- Who provided or endorsed the content? The 'About us' tab tells you who maintains the site — a health organization or an individual (such as someone who has had experience with the illness and wants to share what they have learned).
- Look for scientific references: References include professional journals. JAMA and NEJM are examples.
- Quality control measures - Check if there is an editorial board for quality control; or if the name of the authors, reviewers and content managers are clearly mentioned.
- Is the information up to date? – Up-to-date health information is important. Check the date the information was posted or when the site was last updated (this is usually available at the bottom of the screen). Individual pages may show when they were last updated. Or it may be on the homepage. If not, check for a copyright line. This dates the information.
- Is your privacy protected? Health records should be private. Avoid websites that ask for private information or disclose it without authorization. Most trustworthy sites post their privacy policies.
- Beware of bias – who is funding the website? What is its purpose? Consider whether the site's sponsor exclusively recommends its own products and take it carefully into account.
- What is the evidence? Do not trust untrusted testimonials; they may have been paid (or given free products or services).
- Don't use one webpage. Compare site content with other sites. Verify that other sites back up your findings.
- Find contact info online. You should be able to call, or email, or write to the organisation responsible for the website content.
- In some cases, the website is compliant with a certification such as the HONcode certification which is an ethical standard aimed at offering quality health information. It demonstrates the intent of a website to publish transparent information. The transparency of the website will improve the usefulness and objectivity of the information and the publishment of correct data. HONcode is the oldest and the most used ethical and trustworthy code for medical and health related information available on the Internet.
Use this quick checklist to verify internet health information:
- Is the website sponsored by or affiliated with a federal agency, medical school, or big professional or nonprofit organization?
- If not sponsored by a federal agency, medical school, or significant professional or nonprofit, is the website produced by a healthcare professional, or does it reference one of these sources?
- Who built the site? Is the sponsor's or author’s goal clear?
- Who wrote the information? Is the website's author reachable?
- When was the previous update?
- Is your privacy protected?
MedlinePlus.gov is an NIH website with health information on more than 1,000 topics. To help users evaluate the potential quality and accuracy of online health information, MEDLINEplus has developed
- Evaluating Internet Health Information Tutorial here.
- And “How can I evaluate health information on the Internet?” available here.
The previous tips have been prepared using the following references:
- National Human Genome Research Institute. How to Find Reliable Health Information. https://www.genome.gov/Genetic-and-Rare-Diseases-Information-Center/Finding-reliable-health-information. Updated June 24, 2016. Accessed November 6, 2022.
- Medline plus website. Online health information - what can you trust?. Updated August 8, 2020. Accessed November 6, 2022. Available from: https://medlineplus.gov/ency/patientinstructions/000869.htm
- American Academy of Family Physicians website. Health information on the web: finding reliable information. familydoctor.org/health-information-on-the-web-finding-reliable-information. Updated May 11, 2020. Accessed November 6, 2022.
- National Cancer Institute website. Using trusted resources. https://www.cancer.gov/about-cancer/managing-care/using-trusted-resources. Updated March 16, 2020. Accessed November 6, 2022.
- National Institutes of Health website. How to evaluate health information on the Internet: questions and answers. ods.od.nih.gov/Health_Information/How_To_Evaluate_Health_Information_on_the_Internet_Questions_and_Answers.aspx. Updated June 24, 2011. Accessed November 6, 2022.
- National Institute on Aging. Online Health Information: Is It Reliable? https://www.nia.nih.gov/health/online-health-information-it-reliable. Updated October 31, 2018. Accessed November 6, 2022.
About health misinformation
Because health misinformation is a serious threat to public health, because can cause confusion, and mistrust, harm people’s health, and undermine public health efforts, several organisations provide information, toolkits, and resources to increase understanding, identification, and stopping the spread of health misinformation in their communities. Check for example, the shareable tools that U.S. Surgeon General provides here. Or below:
|10 reasons to use the U.S. Surgeon General’s Community Toolkit for Addressing Health Misinformation||Community Toolkit||Teaching Slides||Talk to your community about health misinformation|
|A trailer video introducing the Community Toolkit that can be used for educational and training purposes.||A 22-page overview of health misinformation and resources to stop it.||A slideshow version of the Community Toolkit for educators and other community leaders.||An infographic with tips on how to talk to your community about health misinformation.|
|Download [MP4, 61.3 MB]|
Where can you find reliable health information online?
- The National Institutes of Health website is a good place to start for reliable health information.
- Government-sponsored health websites are generally reliable. www.usa.gov has all Federal websites.
- Large professional organizations and medical colleges may be good health information providers.
- MedlinePlus.gov is an NIH website with health information on more than 1,000 topics.
- Centers for Disease Control and Prevention (CDC) is the national public health agency of the United States.
- Healthfinder.gov is coordinated by the Office of Disease Prevention and Health Promotion, Office of the Assistant Secretary for Health, Office of the Secretary, U.S. Department of Health and Human Services.
- U.S. Food and Drug Administration (FDA) is a federal agency of the Department of Health and Human Services.
- The Health Information Portal is a one-stop shop facilitating access to population health and healthcare data, information, and expertise in Europe.
- The European Commission website on Public health and European Medicines Agency (EMA) is an agency of the European Union in charge of the evaluation and supervision of medicinal products.
- The National Center for Complementary and Integrative Health also provides “Finding and Evaluating Online Resources”
If you wish more information about this topic or are aware of more tips, please contact us at https://worldcdg.org/index.php/contact
Scientific references to consider: There are several articles describing individuals’ perceptions and needs on health information-seeking and documenting their Internet information–seeking behaviors. We recommend the following ones below. If you wish more information about this topic, please contact us:
- Eysenbach G, Köhler C. How do consumers search for and appraise health information on the world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews. Br Med J. 2002 Mar 09;324(7337):573–7.
- Lee K, Hoti K, Hughes JD, Emmerton L. Dr Google and the consumer: a qualitative study exploring the navigational needs and online health information-seeking behaviors of consumers with chronic health conditions. J Med Internet Res. 2014 Dec 2;16(12):e262.
- Ayers S, Kronenfeld JJ. Chronic illness and health-seeking information on the Internet. Health (London) 2007 Jul;11(3):327–47.
- Lambert SD, Loiselle CG. Health information seeking behavior. Qual Health Res. 2007 Oct;17(8):1006–19.
- Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients' experience of cancer: a qualitative study. Br Med J. 2004 Mar 06;328(7439):564.
Vanessa Ferreira (CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).
Ana Verde (collaborator at CDG & Allies FCT, NOVA University), Javier López and Kevin Aguirre (research volunteers at CDG & Allies FCT, NOVA University)
Marisa Godinho (collaborator at CDG & Allies FCT, NOVA University)
The Site cannot and does not contain medical or health advice. The information is provided for general informational and educational purposes only and is not a substitute for professional advice.
Accordingly, before taking any actions based upon such information, we encourage you to consult with the appropriate professionals. We do not provide any kind of medical or health advice. The use or reliance of any information contained on this site is solely at your own risk.