MPN&MPNr-EuroNet: On-going projects from November 2010 to April 2011

Transcription

1 MPN&MPNr-EuroNet: On-going projects from November 2010 to April 2011 LEADER(S) PROJECTS TO DO LIST, until April 2011 meeting WG 1 WG1 Chair Action Vice-Chair WG1 Co-Chair WG1 Chair Action Chair GUGLIELMELLI, Paola MARTINEZ-AVILES, Luz WG2 Junior Chair CARILLO, Serge ELN JAK2 assay study JAK2V617F questionnaire Reference JAK2V617F assay(s) and reference procedure Reference materials Low JAK2V617F allele burden study JAK2 double/multiple mutation study Detection of mutations in MPN: JAK2V617F qpcr, HRM Meet with E. Schneider and J. Prchal during ASH 2010 meeting; report on ELN WP12 s conclusions; Invite WP12 s D. Grimwade to 3 rd meeting in La Baule. Use information from the questionnaire to decide what are the priorities for standardization (in collaboration with other WG1 chairs) Form a small task group to start writing JAK2V617F guidelines and procedures, to be posted on website Form and coordinate a task group dedicated to reference materials. Contact and invite S. Trapman (BE) for advise. Prepare JAK2 WT/V617F plasmid to send to interested labs in January Ask Ipsogen to produce 0.1% and 1% standards to distribute. Send a detailed procedure to WG1 members Collect cases with JAK2 double mutation, analyse biological and clinical data Determine whether the JAK2 mutations are in the same progenitor, and if found in same progenitor, whether they are on the same allele (46/1, or not). Coordinate the study. 1

2 WG 2 SCHWARZ, Jiri WG2 Chair SCHWARZ, Jiri GIRAUDIER, Stéphane BELLOSILLO, Beatriz GIRAUDIER, Stéphane SKODA, Radek PORRET, Naomi WG2 Junior Chair PLANK, Lukas MARCINEK, Juraj HUSSEIN, Kais SCHMITT-GRAEFF, Annette CARILLO, Serge Strategy for MPN with no mutation of JAK2 and no MPL W515 mutation (S505N, A519Y, K39N, P106L) Histopathology of MPLmutated MPN MPL mutation quality control study Hereditary thrombocytosis Patient databank Histopathology of MLmutated MPN Detection of mutations in MPN: HRM Establish a list of labs studying MPL, with lists of the mutations studied. The list will be presented on the MPN&MPNr Euronet website. Organize the study to be commenced at La Baule. Organize the special histopathology sessions at the 3 rd meeting at La Baule and 4 th meeting in Münich. Prepare MPL plasmids and dilutions; send to labs in January Get results before Feb 15th. Analyze data in February/March. Report results during the 3rd meeting at La Baule (April 6-8, 2011). Prepare questionnaires for the hereditary thrombocytosis sub-group, one for true hereditary states, the other for pediatric cases lacking family history. Questionnaires should be harmonized with Radek Skoda s. See with Radek to write description of Hereditary Thrombocytosis for website, as well as lists of labs with genes studied (MPL, THPO), to be posted on website Advise subgroup on Hereditary Thrombocytosis. Write or help SG, BB write description of Hereditary Thrombocytosis for website Help with patient databank Prepare for special session: select patients, prepare samples 2

3 WG 3 WG3 Chair PERCY, Melanie WG3 Co-Chair CARIO, Holger HUSSEIN, Kais WG3 Junior Chair CARIO, Holger HERMOUET Sylvie Website Pregnancy Survey Plasmids for positive controls (EPO-R, HIF pathway genes) Database for erythrocytosis Analysis of oxygen pathway genes in erythrocytosis Collaboration with HypoxiaNet Congenital Erythrocytosis Description of Congenital Erythrocytosis for website, as well as lists of labs with genes studied (EPO-R, genes of the HIF pathway) for website Send out to all members of the group for further circulation. Prepare plasmids and have them ready for circulation at next meeting. Get database running forward. Prepare presentation of this project at next meeting (La Baule) Speaker at HypoxiaNet 3 rd meeting (January 8-12, 2011, Davos, CH) Participate to HypoxiaNet 3 rd meeting (January 8-12, 2011, Davos, CH) 3

4 WG 4 WG4 Chair WG4 Co-Chair WG4 Co-Chair DOBO, Irène MARTINEZ-AVILES, Luz GUGLIELMELLI, Paola Website Website translation Future meetings Scientific program Publication, dissemination of information, scientific cooperation Recruitment of additional members, countries Patient databank Others Organize who takes care of what on the website Approve new members Find volunteers to be responsible of the ESR forum, MC member forum, WG member forum Translate common pages of website into French Translate common pages of website into Spanish Translate common pages of website into Italian Translate common pages of website into German Decide who takes care of the scientific aspects of future meetings, then work with the scientific committee for the selection of speakers; selection of abstracts; choice of topics for the special session of the Münich meeting. Dates and location of 2012 and 2013 meetings. Decide who supervises this, and how (task group?) -submission of abstracts to meetings: EHA, ASH, ESH, etc... -rules for mentioning MPN&MPNr-EuroNet in publications, oral presentations, posters, etc... -interactions and diffusion of information on the network s activities to national societies of Hematology and to other networks (ELN, MPD consortium, HypoxiaNet) Decide who takes care of recruitment, and how ; start recruiting Make inquiries at the COST office on EC rules for registries of rare diseases (especially for data collected in England). Contact LeukemiaNet. Prepare budget for 2011; Write 2010 report for COST office; etc Third Meeting Organize La Baule meeting (April 6-8, 2011, La Baule (FR) SCHNITTGER, Susanne WG2 Co-Chair Fourth meeting Organize Münich meeting, including the pre-meeting of pathologists with multihead microscope (Day-1) (Sept , 2011, Münich (DE) All Chairs and Co-Chairs 2011 meetings Planning and organization of Special and WG sessions of 3 rd and 4 th meetings HERMANS, Mirjam STSM selection and approval Make rapidly a list of potential STSM for 2011, so that we can plan for them adequately in the 2011 budget; organize the selection of STSM for approval 4

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