URL of this page: https://medlineplus.gov/about/general/genetics/supportgroupfaq/

FAQs for Patient Support and Advocacy Group Reviewers

Through a partnership with Genetic Alliance, MedlinePlus invites patient support and advocacy groups to provide feedback on genetics-related content on the website to help ensure that it is up-to-date and relevant for the patient community. This feedback helps us provide high-quality information about genetics to patients, their families, and the general public.

We hope this page will help answer questions you may have about the process.

What is MedlinePlus?

MedlinePlus is an online health information resource for patients and their families and friends that provides easy-to-understand pages on a variety of health and wellness topics. It is a service of the National Library of Medicine (NLM), which is part of the National Institutes of Health (NIH).

Recently, content from the NLM's Genetics Home Reference website was integrated into MedlinePlus in a new section called MedlinePlus Genetics. This section provides information about genetic conditions and the genes or chromosomes related to those conditions. Please see Learn about MedlinePlus and About MedlinePlus Genetics to learn more.

What genetics information is on MedlinePlus?

  • Within MedlinePlus Genetics, the main page types are genetic condition summaries and gene summaries.
    • Condition summaries provide in-depth information about the major features of the condition, the condition's genetic basis, and its pattern of inheritance.
    • Gene summaries provide the official name and symbol of a gene, an explanation of its normal function, and the health implications of variations in the gene. Gene summaries are not typically included in this update process.
  • Health Topics highlight the symptoms, causes, treatment, and prevention of health conditions. Each page has an easy-to-read overview and displays links to information from NIH and other authoritative sources.
  • Other sections of MedlinePlus may include genetics information, but because the content is maintained independently, these sections are not part of this update process.
    • The Medical Encyclopedia includes articles about many health and wellness topics, including genetic conditions. This content is licensed from A.D.A.M.
    • Medical Tests describe tests used to screen for, diagnose, and guide the treatment of various health conditions. Some of these tests are gene-based.

Why is there sometimes more than one page about the same topic?

Prior to the merging of Genetics Home Reference, MedlinePlus provided select information about genetics and genetic health conditions. These pages differ in scope and complexity than the new MedlinePlus Genetics pages. To serve user needs at all levels, it was decided that all the content would be maintained. In the future, MedlinePlus plans to coordinate the content so there is less redundancy.

What kind of feedback are you looking for?

We ask that you look over the proposed Genetics condition summary and/or Health Topic and review it for accuracy. All suggestions for improvement are welcome. Please review the following information to be sure your suggested change relates to information in MedlinePlus's scope:

Topics addressed in MedlinePlus Genetics condition summaries

  • Clinical description of condition
  • Estimate of the condition's frequency
  • Genetic cause of a condition
  • Gene's role in the body
  • Inheritance of a condition

Topics not addressed in MedlinePlus Genetics condition summaries

  • Diagnostic testing options
  • Treatment or management recommendations
  • Links to individual support and advocacy organizations

Topics addressed in MedlinePlus Health Topics

  • Basic signs and symptoms of condition
  • Diagnostic testing options
  • Treatment or management recommendations
  • Links to authoritative resources

Topics not addressed in MedlinePlus Health Topics

  • In-depth clinical description
  • Genetic mechanism of disease

If your suggestion falls within the scope of MedlinePlus or if you reviewed the MedlinePlus page and think it is accurate, please contact Genetic Alliance at MPGAlert@geneticalliance.org. In your correspondence, please include:

  • Advocacy organization name
  • Contact email
  • Reviewer name
  • The URL of the summary or summaries
  • Suggested changes
  • Citations, including PubMed IDs, supporting the suggestions

How should I indicate my suggested changes or comments?

Many reviewers write out their suggestions in an e-mail. Others create a Microsoft Word document and use the Track Changes feature to insert their suggested changes and make comments, and then return the revised documents via e-mail.

Is there acknowledgment of my review?

We gratefully acknowledge reviewers' contributions on the Patient support and advocacy groups page. However, just let us know if you prefer not to be listed on this page.

If you have questions about submitting a recommendation, please contact Genetic Alliance at MPGAlert@geneticalliance.org.

Thank you for your contribution to MedlinePlus!