Budapest Roundup
How do we manage?
The Consensus document which emerged from the June European Primary Immunodeficiencies Consensus Conference was extrememly well received in Budapest by all three participating organisations, ESID, IPOPI and Ingid.
It set the scene for a welcome new development: a consensus conference for these organisations focusing on the Management of patients with primary immune deficiencies is planned. This is timely, given their last major document on the issue came out ten years ago. (Whether to manage or be managed: that is the question - Ed)
Screen stars promise to boost quality of life and cut cost
Screening of newborn babies captured the imagination of all participants and was discussed by several speakers. A new test is being developed called the TRECS (T-cell receptor excision circles) test, w hich detects certain primary immune deficiencies and is remarkably reliable. It is being done in some hospitals, in some States, in the USA and can be carried out alongside the PKU (phenylketonuria) test, the latter already being done routinely in the UK for all newborns.
The TRECS test is still under clinical trial testing and will only detect children with low numbers of T-cells (an important type of immune system cell) but does not detect CGD and many other conditions.
Doctors have done their homework and worked out that the TRECS screening would save millions of dollars (Fred Modell). How? Because the diagnosis of primary immune disorders, if done early, reaps huge rewards in terms of quality of life with fewer, less invasive treatments and therefore less expenditure.
The results are looking very encouraging. Only 1% of TRECS tests give false positives, so, of the four million children born each year in the USA, 40,000 would have a false positive reading, which would be automatically revealed by their standard subsequent simple tests.
Once the tests are fully verified it is hoped that this type of testing will be expanded to many other immune disorders.
Get me to the registry office on time
The ESID registry now has the records of over 2000 PID patients. It is housed at University Hospital Freiburg in Germany. Basis statistics are shown on the incidence and treatment of PIDs, plus some fascinating data on Quality of Life.The qol questions were put to the parents of all patients under 14 and above that age to the patients themselves. www.esid.org. We shall be posting news about this website from time to time.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research
Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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