Annotated Reading Lists
In late 2004, KS&A created a new staff position entitled “Director of Scientific Communications Services,” a volunteer position that is responsible for gathering and indexing from key scientific journals and medical publications the most relevant information pertaining to X and Y chromosome variations and related health, wellness and education issues. Since creation of this staff position, Lennie Wilson has served continuously as KS&A’s Director of Scientific Communications Services.
For approximately four years prior to assuming this position, Lennie researched these conditions on behalf of a private client and stored the proceeds of her review in a proprietary database, known as the “Minds-On Data” system, which she and her sister created and still maintain. As of March 2006, the Minds-on Data library concerning X and Y chromosome aneuploidy and related health and wellness issues includes over 6,200 articles, about half of which are full-text documents. The database also contains a list of books and other materials that are geared to a lay audience and that may assist in improving the health literacy of its readers and to inform readers concerning the current work being conducted on the periphery of these conditions.
The annotated reading lists for 47,XXY and Klinefelter syndrome, Trisomy X (47,XXX) and 47,XYY syndrome represent a portion of the Minds-On Data library that is deemed most appropriate for a general audience. If you have a specific need (for example, if you are a medical professional considering a research project pertaining to X and/or Y chromosome aneuploidy, an affected individual or the parent of an affected individual with a particular information request), please (JavaScript must be enabled to view this email address) to find out how the Minds-On Data materials can be used to assist you. An additional fee may apply to such targeted literature searches.
There is no charge, however, for using the annotated reading lists provided as a service of KS&A, Lennie Wilson and Minds-On Data.
KS&A endeavors to abide by copyright laws and the rights of owners of copyrighted materials. To the best of our ability, we employ documents and articles on which there is no copyright, or for which appropriate copyright clearances have been attained by KS&A from the owner. In such instances, the materials may be freely downloaded using the link provided. Where such clearances have not been attained, we have made every effort to provide a link to another website where the materials may be viewed (and in some cases downloaded) free of charge. KS&A makes no representation concerning whether such third-party web sites have attained the approval of the copyright holder, but will promptly remove a link to any articles for which the copyright owner informs us in writing that such sites are not abiding by its copyrights and requests that we remove or disable our links to such unauthorized publication.
If you believe that an infringing copyrighted work is accessible on this site, please (JavaScript must be enabled to view this email address) by sending us a description of the copyrighted work that you claim has been infringed and a description of where it is located on our website, along with your name, mailing address, telephone number and e-mail address, and proof that you are (or that you represent) the copyright owner. Upon verification, we will promptly remove or disable access to such material.
To the extent we are unable to acquire the rights to make materials available for download through KS&A’s website, or to locate a link to a third-party site where such materials may be found free of charge to the reader, we have endeavored to include a link from which users may request copies, order and/or purchase the documents for personal use. To the extent that these sites provide an affiliates program or the like (i.e., a standard program whereby a referring website earns a commission based on such sales), KS&A may earn a small fee from such purchases.
Adding a Document to the Reading List
KS&A is always on the lookout for materials and information that may be relevant to our members.
If you know of a document that is not currently on our reading list, but that you perceive should be, please (JavaScript must be enabled to view this email address) in order to let her know. Where possible, please include the article title and name of the author, the condition(s) to which you feel it has relevance, a brief summary of the document and why you feel it should be added to KS&A’s resource lists, and a link (if any) to the location on the Internet where the document can be viewed and/or downloaded with the least expense to the user. Also, if you are the copyright owner, please include a waiver authorizing use of your materials by KS&A.
Published on Mar 11, 2006 at 01:45 PM
Last updated on Oct 31, 2009 at 08:41 AM
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