Finding Reliable Health Information Online
As Internet users quickly discover, an enormous amount of health information is available online. Finding accurate and reliable information on genetic and rare diseases among the millions of online sources is a difficult task for almost everyone. We hope these tips will help you perform searches more easily.
Reviewing Scientific and Medical Literature
Information on just about any disease can be obtained from the published scientific literature. Medical and scientific journals publish articles written for scientists and health professionals. In a process called "peer-review," other professionals review these articles before they are published.
Several types of articles can be found in scientific literature:
- Review articles:
These articles present what is known to date about a disease. Such articles may focus on the cause, diagnosis, treatment or other aspects of a disease.
- Basic science or laboratory research:
These articles present original "basic science" or "laboratory" research.
- Case reports:
These articles describe and discuss the clinical aspects of an individual with a disease. Such articles may also present unusual or unexpected cases.
- Articles discussing treatment:
These articles discuss the effects in humans of various treatments that have been tested or used in a specific disease. Articles that discuss treatment may be about many different types of studies that are conducted in humans. Some of the more common studies include clinical trials, case-control studies, cohort studies and case reports.
Treatment articles in published scientific literature report human studies with negative outcomes as well as those with positive outcomes. In other words, some articles report studies where a treatment was deemed to have beneficial effects, while others report studies where a treatment was not deemed to have beneficial effects and/or may have been associated with side effects, some of which could be severe.
Some studies report on the safety of a particular treatment, and do not directly address whether the treatment was actually deemed to have had a beneficial effect. The treatment discussed may be already in use, or it may be experimental and not widely available (or not available at all).
Interpreting the results of studies and weighing the evidence can be a very complex task. Because of this complexity, and because of the technical nature of these articles, we strongly recommend that you discuss with your physician any articles that interest you.
- Gene Tests/Gene Clinics
Comprehensive information on genetic testing and genetic counseling. Includes Educational Materials:
- What is Genetic Testing?
- Who Should Have A Genetics Consultation?
- What is a Genetics Consultation?
- Users must register before accessing this information.
A service of the National Library of Medicine (NLM) and the National Institutes of Health (NIH), Medlineplus offers high-quality information on more than 600 diseases and conditions. MEDLINEplus describes itself as "a goldmine of good health information from the world's largest medical library."
- Evaluating Health Information
To help people find reliable and scientifically accurate health information, MEDLINEplus has posted a series of documents and links called Evaluating Health Information, which provides news, information from NIH, information on research and specific conditions and links to organizations and directories.
- MEDLINEplus Guide to Healthy Web Surfing
To help users evaluate the potential quality and accuracy of online health information, MEDLINEplus has developed Healthy Web Surfing. Addressing issues such as the source and currency of the information can help us make better use of online resources.
Selecting and Evaluating Search Engines
- The University at Albany Libraries
The University at Albany Libraries developed the Internet Tutorials site to provide information on how search engines work and how they perform these searches. The site provides users with names of search engines, and also offers information and tutorials on using and searching the Web, browsers, research guides and subject directories.
- The University of Medicine and Dentistry of New Jersey
The University of Medicine and Dentistry of New Jersey Library.
Online Medical Dictionaries and Encyclopedias
Complex medical terminology can be difficult to understand. The Web provides some excellent resources to aid in our understanding of these terms and medical jargon.
- University of Newcastle-Upon-Tyne's (U.K.) Online Medical Dictionary of the CancerWEB project
Contains more than 46,000 definitions.
- MEDLINEplus: Medical Encyclopedia
The A.D.A.M. (Animated Dissection of Anatomy for Medicine) illustrated health encyclopedia, a part of MEDLINEplus, contains more than 4,000 articles on conditions, treatments, and much more.
PubMed is NIH's searchable database of published scientific and medical literature. PubMed contains citations from 4,600 journals from the United States and 70 other countries. More than 12 million citations are available in MEDLINE, one component of PubMed.
Information for locating an article, its title, authors and when it was published is listed in PubMed search results. Using the condition name as your search term should locate articles that may be of interest to you. To narrow your search, click on the "Limits" box below the search box and specify the criteria you would like to use to locate articles that may be more relevant to your questions. For example, using the limits of only review articles (on the pull-down menu under "Publication Types"), only items with the condition name in the title, only items with abstracts, only items in English and only human studies, you should locate abstracts of specific interest.
PubMed searches provide citations on journal articles. Citations may include links to article summaries, or links to full articles (through "LinkOut"; see below). For copies of full articles, you can contact a medical/university library, contact your local library for interlibrary loan, or order them online.
NIH and the Food and Drug Administration (FDA) developed ClinicalTrials.gov to provide patients, family members and members of the public with current information about clinical research studies and clinical trials that are enrolling individuals.
From the home page, you can enter terms such as condition names, study locations (cities or states), and descriptive terms for patients (such as adult or adolescent). After performing a search, there is a list of search results. Click on a study to review the study's "eligibility" criteria to determine if you or someone else would qualify. To learn more about the study, refer to the study's contact information.
Be sure to check ClinicalTrials.gov often for updates to study information.
Computer Retrieval of Information on Scientific Projects (CRISP)
CRISP is NIH's searchable database of federally funded biomedical research projects conducted at universities, hospitals, and other research institutions. CRISP includes projects funded by NIH, the Substance Abuse and Mental Health Services Administration (SAMHSA), the Health Resources and Services Administration (HRSA), the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), and the Office of the Assistant Secretary of Health (OASH), all government agencies.
To search CRISP for studies on a specific disease or condition, enter the condition name in the "Enter Search Terms" box and click the "and" button below the box. Then click "Submit Query." Using other search field boxes, you can narrow your search by looking for information from specific years and states.
Online Mendelian Inheritance in Man (OMIM)
OMIM is an electronic catalog of human genes and genetic disorders. The Web site was developed by the National Center for Biotechnology Information (NCBI), and contains text and reference information. Although the language is technical, OMIM is considered to be a very comprehensive source of information. Based on the complex information found in OMIM, you may benefit from discussing its contents with a medical professional. As with PubMed, you can search OMIM using terms and setting search limits.
Other NIH Resources
The National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD) Web sites provide helpful information on genetic and/or rare diseases research, genetic/rare conditions, patient support groups and much more.
Both Web sites also provide general information about clinical trials.
The Genetics Home Reference
The Genetics Home Reference, the National Library of Medicine's Web site for consumer information about genetic conditions and the genes responsible for those conditions, offers summaries on more than 70 diseases and more than 50 genes.
Other Sources of Information
Apart from the information listed above, several organizations are dedicated to helping individuals with genetic and rare diseases and provide an array of information.
The Genetic Alliance
As a broad-based coalition, the Genetic Alliance builds partnerships to promote healthy lives for all those living with genetic conditions. The Genetic Alliance's Web site offers information on genetic conditions and issues related to genetic conditions.
The National Organization for Rare Disorders (NORD)
NORD is a federation of not-for-profit voluntary health organizations serving people with rare disorders. You can search their site or obtain a printed report for a specific disorder by ordering it through NORD's Web site, by calling, or by writing to NORD.
ORPHANET (English Version)
ORPHANET is a French multilingual database dedicated to information on rare diseases and orphan drugs for patients and their families, health professionals and researchers, support groups, and industry.
The material provided is for informational or educational purposes only and is not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests and products by the National Human Genome Research Institute or the Office of Rare Diseases at the National Institutes of Health. We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.
Last Reviewed: August 15, 2008