Introduction

The BRSV Online Rett Syndrome Bibliography is meant to serve the international Rett community, researchers specializing in Rett syndrome as well as interested laymen.

This bibliography is society´s memory of anything that is released about the Rett syndrome, either through written material or by means of video or audio recording. To the rule that all items included should deal explicitly with the Rett syndrome, only one exception has been made for the early writings of Dr. Andreas Rett.

In order to avoid crashes, a healthy mind makes eliminating choices as to what should be stored in its memory. So does this bibliography: foliants and leaflets of Rett syndrome associations, articles on local topics in newsletters or national and private Rett syndrome websites, and personal video´s are systematically "forgotten". What is stored are scientific articles from medical journals or on the internet, books and booklets, papers, theses, popularizing literature, audio- and videotapes that exceed particularity (among which reports of Rett syndrome congresses), transcripts, newsletters as such, current research projects (the results of which will be printed out sooner or later).

For the gathering of the information, databases were consulted and compared: general medical ones such as these of the National Library of Medicine (MEDLINE) and the more modest Deutsches Bibliotheksinstitut, as well as the Rett syndrome library files of associations such as the International Rett Syndrome Association (IRSA) and the Rett Syndrome Association of Australia (RSAA). Further research in a variety of sources revealed an important number of items not yet recorded.

The BRSV intends to update the bibliography on a most regular basis.

For every item, all available information was gathered concerning following topics: type of publication, author(s), language, year, page(s), comment (such as publisher, vernacular title, etc.), and source (where documents can be ordered). As to the articles, some specific topics are mentioned: journal, volume and number, country, institute and department of research, medical headings and keywords, and abstracts (see TOPICS).

The storage of this information in a new database made it possible to perform detailed queries. As the BRSV website does not (yet) dispose of a search engine of its own, queries are currently performed by the association itself. To that end visitors should fill in and submit a Query Form. They will be provided with the data asked for by e-mail post.



I wish to express my gratitude:

• to Peter Vanherck, Jan Van Zwam, Dr. Luc de Muynck, Jan Vreys, members of the BRSV board, who made this project possible at all;
• to Kathy Hunter, founder and president of IRSA, for allowing me free use of the bibliographical data of IRSA´s library;
• to Bill Callaghan, president of the RSAA, who granted me free access and use of his RSAA library;
• to Mary Maker, member of the IRSA staff, who answered with undiminished patience my many requests for information;
• to Linda Wilhelm, from NLM's Reference and Customer Services Section, for giving me accurate advice on the use of the Medline database;
• to the many individuals of the worldwide Rett community, who shared with me their knowledge of locally released documents;
• finally, to my wife and children, for giving me carte blanche through the many hours it took to complete this project.

On behalf of the BRSV,

Johan Delaere