Research Information

After receiving your diagnosis, you might want to find out as much as you can about your condition. This can be a difficult process if you are unsure where to look. 

To learn more about your condition there are several reliable sources of information on the Internet. NZORD has a list of rare disease databases. In particular, there are two sources of reliable information that shouldn't be missed: Medscape and PubMed.


Medscape offers a source of clinical information intended for the non-science public (while PubMed is strictly the source for original research and can therefore be quite technical in content). In Medscape, older articles tend to be free, full-text access, and a username and password may be required to access articles, though this is easy to set up online.


Pubmed is a searchable database of clinical and biomedical reports published in medical journals. An excellent tutorial ("Quick tours") is available to get you started. Articles in Pubmed are written for researchers and medical professionals and tend to use technical jargon. PubMed, though, is the source.  If the clinical research has been published, it will appear in PubMed.

How to Access an Article

I. Linkout in PubMed

If you find an article of interest, click on ‘Links’ at the far right of the screen. This will direct you to LinkOut, which takes you to the journal website to purchase single articles or access the free, full-text version. Click here to read more about LinkOut in PubMed.

Most journal articles contain an abstract (a summary) that can be read for free. (See a sample abstract obtained from PubMed on the latest research on arachnoid cysts.) Access to the full text of the article (the article in its entirety) usually requires a subscription to the journal. Individual articles can be purchased online, but the charges can be slightly expensive (and are typically in USA dollars). 

II. Specifically search for "free, full-text articles":  

There are two ways to find free, full-text articles:

  1. Click on PubMed Central (PMC) – all articles in here are free, full-text access. A defined list of journals make up the PMC journal list.
  2. Go to PubMed and click on the ‘Limits’ box on the search screen. Your search will retrieve articles published in PMC journals and also journals outside of this listing.

Using Limits

  1. In “Limits”, type in the text you would like to search for: e.g. “arachnoid cyst”.
  2. Define ‘limits’ that will work best for you, e.g. click on ‘free full text’. 
  3. You can also select a language preference and type of article such as ‘clinical trial’ or ‘review’ (reviews are very good as they provide a basic overview of the research topic).
  4. click on ‘Go’ at the bottom of the screen.

Results will appear in which the articles listed are all available for free online.

Click on the free article or other highlighted text that says ‘free full text’. You should be taken straight to the article and you might be given the option of downloading the article as a PDF file.

If you want to remove the ‘limits’ from any future searches, simply click on the “Limits” box to de-select.

III. Ask the researcher directly

The authors of the article may designate a direct contact person for inquiries and provide an e-mail address. Many researchers are quite willing to send articles via e-mail (PDF) if they are provided with a brief explanation of the request and how it is intended to be used. (Note: Because of copyright restrictions authors are more willing to send an article intended to be read by an individual. Mass distribution or posting online is generally not allowed and would require permission by the publisher).