Doing internet research for the first time
The following was adapted from an article published in the 1994 Little People of America Today (LPA Today) newsletter.
Maintaining a personal, updated library of medical information pertaining to your particular form of dwarfism serves two purposes. First, copies of your information could be given to your health care provider. Secondly, a person of short stature and his/her family should read the articles and gain additional knowledge about the clinical features of a particular form of dwarfism. While a layman probably won’t understand the entire contents of an article published in a medical journal, it can be used as a springboard to generate questions to be discussed with your physician.
The following is only a brief introduction on how to do a review of the medical literature. Additional information about how to conduct a medical review can be obtained from your local librarian or by taking a class at a local college. Librarians can be an extremely helpful and often under-used resource. Librarians LOVE questions about research.
The first step in the process is to find out if your local library or medical school subscribes to Medline. Medline is now available FREE on the world wide web (please see the Do Your Own Research section to link to Science Magazine articles) This, and other similar databases, allows a person access to articles (just the article abstracts or summaries) that relate to a particular medical topic. Call the library in advance because it is customary to reserve a time slot to work on the Medline computers.
When you are ready to do your review of the literature, ask the librarian if he or she will demonstrate how the system works. You can also pull up the computer program and review the contents of the help function. Additionally, you can usually find documents next to the Medline computer that provide information about the system.
After you have familiarized yourself with the database, log on (access) the database and go through the preliminary steps on the menu. When the menu asks you to enter the topic you want to research, type in the full name of your dwarfism. For example, you would want to type in Spondylometaphyseal Dysplasia with no abbreviations. After the computer searches the database, continue to follow the menu and review the article titles and article summaries (abstracts) that relate to your form of short stature.
Note that sometimes a condition can have more than one name such as Spondylometaphyseal Dysplasia type Kozlowski or Kozlowski Dwarfism. You may need to enter a combination of different names.
If a printer is connected to the computer, print the references for the articles you want to read. Each reference will contain the article title, journal, author(s), date published, name of the journal, and the journal volume number. You may need to ask the reference librarian to show you how and where to find the material your search came up with. Some may have to be obtained through inter-library loan. Although this is a time consuming process, the knowledge gained is invaluable. In addition, librarians already know how to do this and will be happy to help you get what you need.
Some members of Little People of America may already have the materials you are looking for. Please see our contact and talking to other families sections to communicate with people who have already done these searches.
If you just learned about being a little person, the Where Do I Start page may be helpful.
Contact us with any questions. We are happy to help. No question is too silly or easy.