 |
 |
Thanks to everyone who responded.
I've use the printed version for a number of years now and found it a particularly good complement to (say) Birth defects encyclopedia. If a clinician asks for information on a syndrome, they often don't know anything about patient groups and may not have an appropriate handout to give out - the Caf directory caters for this. I don't know whether it has more information than say the Health Education Board for Scotland site (www.hebs.com - having difficulties at present), but I would say it is well worth the money.
We have it in paper form and find it very useful for finding unusual syndromes, the information is in plain english and can be given to patients.Usual 2 pages per syndrome and an address of a support group for more information. Worth buying.
Most of it is free via the internet (<http://www.cafamily.org.uk/dirworks.html>)? I'm not sure what you get extra on the CD ROM/print version as I havent used it.It is UK based, which helps from the perspective of self help group details. Does have some info on the conditions, tho not lots, so better than just a directory of support group details. Enquirers tend to want to know more about treatment/self help, which isnt really covered.Only childhood diseases (there was a stage when they were planning to extend it to adult ones too, but dont know how that went). They have text certainly written by experts, but not always recently updated. <http://www.cafamily.org.uk/><http://www.cafamily.org.uk/ I> I tend to use it and <http://www.rarediseases.org/search/rdbsearch.html> (tho their full info isnt free).
Really useful resource - also available on the net at: <http://www.cafamily.org.uk/>
We have this, but have used it rarely. It is mainly of use as a list of contact addresses for support groups, but it also has a good summary of each disorder.
You have probably had lots of replies by now but I found it very useful when I worked in a paediatric hospital library in Ireland a few years ack. It's esp good for patient information, a lot of the consultants found it very good for that. Also the addresses of support group for the disorders are included which is beneficial to parents.
Kirsty Coltart
Divisional Librarian, Clinical Services
North Glasgow University Hospitals NHS Trust
Library, Sir TJ Thomson Conference Centre
Stobhill Hospital, 133 Balornock Road
Glasgow, G21 3UW
Tel No: 0141 201 3357
Visit our website : http://www.northglashealthinfo.org.uk/
_________________________________________________________________
The information contained within this e-mail and in any
attachments is confidential and may be privileged. If you are
not the intended recipient, please destroy this message, delete
any copies held on your systems and notify the sender immediately.
You should not retain, copy or use this e-mail for any purpose,
nor disclose all or any part of its content to any other person.
All messages passing through this gateway are checked for viruses
but we strongly recommend that you check for viruses using your
own virus scanner as North Glasgow University Hospitals NHS Trust
will not take responsibility for any damage caused as a result of
virus infection.