Dear All,
Its the middle of the year and it seems to have gone by very quickly indeed. We had a successful working party session in Paris at EBMT and we are already moving onto the Autumn meeting which will be held in Belgrade on 6th - 8th October.
Mario Abinun is hosting this year's event and it is our first venture into the Balkans. We are hoping to try and encourage attendance from some of the Balkan and eastern European nations so that we promote the optimal management of patients with severe immunodeficiencies in these countries.
The J project under Lazlo Marodi's has done a tremendous job in promoting education and awareness of PIDs but we need to take this onto the next level with the aim of providing the best management possible. Details of the meeting and the programme will be available on the website soon.
I am happy to say that the EBMT IEWP guidelines for transplantation of SCID and other severe immunodeficiencies are now available on the ESID and EBMT websites. Thank you to all the different contributors and I hope these guidelines will help in providing the best treatment protocols for our patients. In Belgrade we will need to assess how well they are being followed and used. Personally I have received far fewer e-mails asking for how patients should be transplanted. That may mean that the guidelines document is doing its job or just that people really don't want my advice anymore!
I also recently went to a meeting at the EU organised by IPOPI to try and convince EU members that all EU nations should adopt newborn screening for SCID. Newborn screening is now one of the major issues surrounding management of SCID. it is absolutely clear that identifying SCID at birth and preventing infants from contracting opportunistic infections leads to a better survival outcome (see Brown et al., Blood 2011 Mar 17;117(11):3243-6). It will also tell us truly what the incidence of SCID in Europe is. The USA have already mandated that all states should adopt newborn screening and 4 states currently screen all newborns. The data coming out is already extremely interesting and highlights that SCID may be far more frequent than we originally imagined. The technology to screen is already available and I think we should all be putting pressure on national screening committees to adopt SCID screening. The sooner screening is adopted, the sooner we will be able to improve their chances of survival. The EU meeting will, I hope, be the start of the process to try and raise this issue and exert some influence on member states to adopt this screening programme.
I hope you all have a good summer.
Best wishes
Bobby
Chairperson ESID WP Genetics
Return to newsletter
