Candidates
Post: EBMT Secretary
Candidate: Per Ljungman
I have the honour to stand for re-election as the EBMT secretary. The EBMT has for many years been a very strong scientific organisation and will hopefully remain so in the future based on the current activities in the Working Parties and the various Committees. However, the more administrative side of EBMT is also gaining in importance on the international level. Many international and national regulations influence the practice of stem-cell transplantation. During the last years, the EBMT has started to take a much more active part in discussing with the EU, the EMEA, and different national authorities the implications of new regulations and the specific needs of the HSCT field.
Other important activities are the development of accreditation through the EBMT and the JACIE accreditation programmes, the development of the Clinical Trials infrastructure, and the publication of the EBMT Indications Manuscript. All these activities require a well-functioning administrative organisation within the EBMT and if re-elected as Secretary, it would give me the opportunity to be involved in these activities for another three years.
Sincerely yours,
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Post: Aplastic Anaemia Working Party (AAWP) Chair
Candidate: Jakob Passweg
I will be running for re-election for a 2nd term as Chairman of the Aplastic Anaemia Working Party, together with Anna Locasciulli of Rome who is Secretary of the Working Party.
In the past 3 years the Working Party has been running a randomised clinical trial on the use of growth factors and of early re-treatment with immunosuppression in the case of slow response, and a prospective study on reduced intensity conditioning for unrelated donor transplantation in aplastic anaemia.
In the future we will continue this work. We intend to focus with prospective studies on the treatment of refractory patients and are currently evaluating new ideas for the next generation of prospective studies. Transplantation from donors other than HLA-identical siblings has become ever more important in recent years and new strategies are being discussed. Older patients do not fare as well as young patients with sibling donors and new ways of transplanting these patients, especially if not responding to immunosuppressive treatment need to be found.
Lastly, the AAWP has a longstanding tradition of collecting not only transplant data but also data on patients receiving immunosuppressive treatment. These data are rather heterogeneous in quality and we will make an effort to improve the data quality in this registry.
Finally a Fanconi Anaemia subcommittee has been founded that is co-sponsored by the Paediatrics Working Party (PDWP) and which will try to improve our approach to this difficult disease.
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Post: Autoimmune Diseases Working Party (ADWP) Chair
Candidate: Riccardo Saccardi
After 3 years of chairing the Autoimmune Diseases Working Party (ADWP) I am pleased to stand for re-election and would welcome your support in order to consolidate the activities developed during my first term in office.
Since 2000, commercial availability of a number of new biological drugs has remarkably modified the therapeutic approach to a number of Autoimmune Diseases (AD), including the indication for Haematopoietic Stem-Cell Transplant (HSCT). Dealing with this new clinical background has been one of the major challenges for the ADWP in the last 3 years. With the invaluable support of the WP Secretary, Dominique Farge, and many active WP members, three prospective, randomised clinical trials have either been promoted or started in the major diseases of Systemic Sclerosis, Multiple Sclerosis and Crohn’s disease. A fourth trial on Systemic Lupus Erythemathosus is currently in preparation. In addition a retrospective analysis of more than 100 paediatric patients has been launched together with the Paediatric and Inborn Error Working Parties. Despite promotional activity, a number of patients are currently treated outside of these institutional protocols and more work is needed to increase the enrolment of patients into studies.
Considering the relatively small number of procedures, high quality data reporting to the EBMT database is crucial to support the scientists involved. Within the context of the EBMT registry centralisation process it was decided to transfer the data reported in the initial Basel database into Promise and to consolidate the registry data management function in the EBMT Paris Office. The MED-A data collected in the original Basel database were transferred to Promise in September of 2006. MED-B implementation is ongoing, but is almost concluded as the disease-specific Multiple Sclerosis, Systemic Sclerosis and JIA MED-B Forms have now been implemented in Promise.
A new data manager, Corrine Durand, has been recruited to the Paris Office and will work part-time on data collection for the ADWP. Her first task will be to update the follow-up of all registered patients and ask for a reference name of the physician (neurologist, rheumatologist, etc.) in addition to the haematologist who is currently taking care of the patients. This information will enable the ADWP to create an updated spreadsheet for each single disease and ensure the more specific data requests be sent to the relevant physician.
The next 3 years will be crucial for catching this second wave of activity in Europe. Beside the promotion of the ongoing trials through publications and presentations at meetings, a number of additional targets are to be fulfilled, including promotion of HSCT for ADs within the Outreach project, development of multi-centric trials for less frequent indications (e.g. CIDP) and to seek consensus amongst other specialists for new diseases such as Refractory bullous skin diseases. A WP meeting was recently held in Paris to discuss organisational issues, project proposals and future plans-. Quarterly newsletter will be issued and made available on the WP webpage to keep all of the involved specialists well informed of ongoing and new activities.
