Research

Access to information for non-medical people has undergone a transformation since the internet age began. Anyone anywhere with internet access can find up-to-date information about congenital adrenal hyperplasia, and some useful sites for beginning searches are listed on our Links page.

Further searches can be undertaken through the following popular search engines:

1. Google Scholar

Google Scholar is a web search engine for scholarly literature. It offers articles for free download and can be searched using key words, e.g. ‘congenital adrenal hyperplasia growth’.

2. Medscape

Medscape is a web resource featuring a wide range of reliable information including medical articles. Older articles tend to be free for full text access. Access requires a username and password to access articles. This is easy to set up online.

3. Pubmed

Pubmed is a searchable database of clinical and biomedical reports published in medical journals. A tutorial is available to get you started. The articles represented in Pubmed are written for researchers and medical professionals and tend to use technical jargon.

Accessing a Pubmed article: If you find an article of interest, click on ‘Links’ at the far right of the screen and then click on ‘LinkOut’ that appears on a popup box. This will take you to LinkOut, which directs you to the journal website to purchase single articles or access the free full text version. For more about LinkOut, see the Help menu or go to the LinkOut home page.

Sample abstract from Pubmed

Journal: Hormone Research 2007; 68 Suppl 5:158–164. Epub 2007 Dec 10
Title: Adult consequences of congenital adrenal hyperplasia
Authors: Arlt, W., Krone, N.
Affiliation: Division of Medical Sciences, University of Birmingham, UK, w.arlt@bham.ac.uk
Background: Congential adrenal hyperplasia (CAH) caused by 21-hydroxylase deficiency accounts for 95% of all CAH cases and is one of the most common metabolic disorders. While consensus and guidelines on therapeutic management in infancy and childhood are available, data regarding the treatment of adults with CAH are scarce. This review highlights the issues that need to be addressed when caring for the adult CAH patient. Issues include glucocorticoid and mineralocorticoid replacement, adrenal crises, female and male fertility, genetic counselling, prenatal dexamethasone treatment, pregnancy and the odds of long-term morbidity and mortality in these patients.
Conclusions: Large-scale audit studies are urgently required to help optimise management and long-term outcome of these patients, as are optimisation of glucocortinicoid replacement and biochemical monitoring tools. It is very important that the adult CAH patient receive regular monitoring by a multidisciplinary team at the secondary- or tertiary-care level.
Copyright (c) 2007. S. Karger, A. G. Basel.

Other options: The authors of an 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.)

4. Wikipedia

While not a scholarly or academic source, Wikipedia offers an excellent way of sourcing basic data or definitions in easy-to-understand layman’s terms via a free encyclopaedia.

5. The Cochrane Collaboration

The Cochrane Collaboration has over 20,000 global members and provides a free portal to the Cochrane Library. Membership is free. Cochrane sites allow medical practitioners, researchers, authors and patients access to large numbers of up-to-date reviews of evidence-based research. Articles cover a wide range of health topics, from the common cold to child cancer. Those with basic online search skills can use this site to access data quite easily. Cochrane is simple to navigate and its information is written (quite literally) in ‘plain language’.