Inborn Errors Working Party (IEWP)

IEWP - Newsletter March 2014


Dear colleagues, 

Many of you will be aware of recent changes within IEWP. To summarise, after 6 years in post, Fulvio Porta has stepped down as secretary - I am sure you will wish to join me in thanking him for his contributions over this time. Arjan Lankester from Leiden has agreed to take over the role of IEWP secretary.

To improve the profile of IEWP within the literature, I have set up an IEWP 'Gene Therapy Sub-committee', with Marina Cavazzana and Alessandro Aiuti as co- leads. Authors on publications which include data from more than one centre can add 'on behalf of the gene therapy sub-committee of IEWP' to the authorship, which will raise our profile. The same is true for all oral or poster presentations given on behalf of the gene therapy sub-committee.

I ask you to consider adding 'on behalf of IEWP' to other publications and presentations when appropriate (for instance, when presenting or publishing data from two or more IEWP centres, even if other non-IEWP centres are involved).

It would be helpful if you have an oral or poster presentation or give a talk at a meeting on behalf of IEWP, that you e-mail the details to Roz Gale when you know the work has been accepted for the meeting, so that she can take the details to collate figures for our record of annual activity.

Two one day workshops are planned for later in the year, and details regarding these will be circulated by email. In addition, there are three upcoming meetings this year where data from studies can be presented:

  • PDWP/EBMT Paediatric Nurses/ including IEWP educational day - Jerusalem 21-23 May 2014
  • IEWP Autumn Meeting - Munich 17-19 October 2014
  • 16th Biennial ESID meeting - Prague 29 October - 1 November 2014

A number of studies are ongoing which you may receive information about in the coming months:

- Outcome of CGD HSCT following conditioning with treosulfan-based regimens (Mary Slatter/Karl-Walter Sykora)

- DOCK8 clinical study (Michael Albert)

- Outcome of CD40L HSCT update (Graham Davies/Andy Gennery)

- Outcome study on patients with profound CID (Stephan Ehl)

- Outcome study of immune reconstitution post-rituximab following HSCT for PID (Robbert Bredius)

- Outcome study of HSCT for non-artemis DNA repair defective PIDs (Andy Gennery)

I look forward to seeing you in the near future

Best wishes,

Andy Gennery
Chair IEWP