Linda here - If you are looking for medical journal articles relevant to your specific type of CMT or CMT symptoms we thought we'd ask Ian Gordon, Coordinator Brock Business Information Service (BBIS)Head, Reference Information Services Sciences Librarian at Brock University, the person who has been doing our searches for many years, how you can go about finding your own data on CMT. If you are on the Internet though, CMTNEWS.com will be bringing you updated lists of journal articles if possible with their abstracts only. There are copyrights to consider. An abstract is the paragraph under the title that puts the entire paper in a nutshell for you. If you want the entire journal article, this will tell you how to get it. Now, to Ian.

Linda - Ian, thanks for all your work on our behalf through the years and thanks for this interview. Tell me, please, how can people who are on the WWW find research journal articles on CMT besides CMTNEWS.com? What medical journal web sites offer them?
Ian G. - CMT-related research is published exclusively in peer-reviewed medical journals and tends not to surface on the Internet, in the news, other media or in magazines. CMT articles are published in any number of journals, but I have noted that most articles are published in a small number of titles such as Neurology, Muscle & Nerve, Motor Control, Neuromuscular Disorders, etc. Rather than browsing through publishers' web sites on a regular basis it is recommended that searchers link to resources similar to CMTNEWS.com or MEDLINEplus Health Information for current research and general information. It is a common mistake to think that CMT-related research is indexed in Internet journal aggregators and databases such as ingenta HighWire Press, Free Medical Journals, PubList, or PubMed Central.

These resources do not usually capture enough CMT research. However, most (if not all) CMT-related research is eventually indexed in the EMBASE or MEDLINE (PubMed) databases. I would recommend concentrating your efforts on effectively using the U.S. National Library of Medicine's (NLM) PubMed
database to save valuable time and energy.

Linda - If a person is not on the Internet, what avenues can they take to search out articles?
Ian G. - A good question. In the rush to re-invent access to the medical research literature, paper resources have all but disappeared. A significant majority of medical sciences journals will only be available in electronic format within the next five years. Contacting a local Health Sciences Librarian through a college, university, clinic, foundation, public or hospital library would be an excellent first step in having someone help you identify your information needs, resources at your disposal, and how to repeat your search request on a regular basis. A personal e-mail address and access to the Internet are becoming increasingly important if not crucial in your quest for information. Be persistent and don't be afraid to ask for assistance.

Linda - What strategies do I use to maximize the relevancy of my search results?
Ian G. - Most researchers exclusively use the US National Library of Medicine's PubMed (MEDLINE) database. Searching is free, the content is up to date and the search engine is very flexible. It is important to remember that any PubMed search results are only as good as the questions you ask the database. A good search utilizes a series of natural language keywords ie. hereditary and neuropathy and motor and/or the appropriate NLM's MeSH (Medical Subject Headings) ie. Charcot-Marie-Tooth Disease. Continue to test the database using a series of repeating strategies, don't forget to write them down, and then search the database on a regular database adjusting when appropriate. Check out the PubMed tutorial linked to the database home page. Once again, find a health sciences professional that has mastered PubMed, take them out to lunch, and have them show you how to exploit the database.

Linda - How can I obtain articles once I have identified what I want?
Ian G. - Hospital and academic libraries pay big bucks for subscriptions to journals for the exclusive use of their research and teaching communities. Nothing of value is free and this is certainly the case for peer-reviewed journals and their articles. Searching the Internet for library catalogues may not help you identify locations for print or online copies of articles. Increasingly libraries are linking with consortiums, document retrieval services and health sciences' libraries to connect with online journal article providers and publishers such as Canada's CISTI and the NLM's Loansome DOC. However, too many individuals are on the outside looking in when wanting to order individual articles. Once again, contact your local library and ask for assistance in identifying local, regional, academic, commercial and international document service providers.

Linda - How flexible and expensive are these document retrieval services?
Ian G. - Most requested articles can be delivered within 48 hours by mail or fax. Copyright restrictions limit the distribution of articles in electronic format. Charges start at $10 US and can climb to $50 per article. Flexibility comes at a price. The more eclectic and rush the request ... the greater the charge. Although some scholastic journals are beginning to supply articles directly from their web page using a credit card, this service is the exception rather than the rule. I would recommend working with individual health professionals working at facilities that already provide document delivery and have agreements with established document retrieval services. This would increase the number of options and usually lowers the average price of articles ordered on a regular basis.

Linda - What research areas am I missing when using traditional databases and Internet resources?
Ian G. - Professional online searchers know when to test and try alternate medical databases, resources, and contacts. However, CMT-related research tends not
to fall within these non-traditional media sources. Chasing down that elusive or grey-literature article is very time consuming. It is my observation that CMT-related research lends itself to serious researchers who exchange information using traditional and scholarly means of communication. A good resource to begin this type of search is the New York Academy of Medicine's Grey Literature Page. There are many good applied health sciences meta-web pages and discussion lists that will give you a head-start on finding and retrieving information. McMaster University Tom Flemming's Health Care Information Resources web page is an excellent resource. These contacts and others in your area are great people to know and utilize in your search for current research.

Linda - Thanks very much, Ian. We know that doctors cannot be up on all the research all the time. Many of us like to know what is happening so we can better inform our doctors should a new finding be made concerning our particular type of CMT or a specific symptom. Your information will help us all keep up to date on current research.
MEDLINE plus Health Information
http//www.nlm.nih.gov/medlineplus/charcotmarietoothdisease.html
ingenta
http//www.ingenta.com/
HighWire Press
http//highwire.stanford.edu/
Free Medical Journals
http//www.lib.uiowa.edu/hardin/md/ej.html
PubList
http://www.publist.com/
PubMed Central
http://www.pubmedcentral.nih.gov/index.html
PubMed (MEDLINE)
http//www.ncbi.nlm.nih.gov/entrez/query.fcgi
CISTI
http://www.nrc.ca/cisti/docdel/docdel_e.shtml
NLM's Loansome DOC
http//www.nlm.nih.gov/pubs/factsheets/loansome_doc.html
New York Academy of Medicine's Grey Literature Page
http://www.nyam.org/library/greylit/
MEDLIB-L
http://www.mlanet.org/discussion/medlibl.html
Health Care Information Resources (Tom Flemming)
McMaster University Health Sciences Library
http://wwwhsl.mcmaster.ca/tomflem/top.html
Ian Gordon, Coordinator Brock Business Information Service (BBIS)Head, Reference Information Services Sciences Librarian
http://www.brocku.ca/library/research/chem/igbio.htm
http://www.brocku.ca/library/services/BBIS.html