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Comments requested: prophylaxis in boys with severe hemophilia 0 L. Schmeidler The Factor VIII, Factor IX and Rare Coagulation Disorders Subcommittee has a new manuscript for comment, please provide feedback!
by L. Schmeidler
Monday, July 20, 2015
Clinical Trial Design for Hemophilia project requests feedback 0 L. Schmeidler The project group on "Clinical Trial Design for Hemophilia" chaired by Dr. Di Michele has completed it's mandate and prepared a manuscript to be submitted to JTH. Please see the manuscript and supplemental materials on the Subcommittee homepage and provide comments, either on the forum below or to the author. Corresponding Author: Donna M. Di Michele, MD. NHLBI, DBDR 6701 Rockledge Drive, Room 9132 Bethesda, MD. 20892 PHONE:  301-435-0080 FAX:       301-480-0867 E-MAIL: donna.dimichele@nih.gov
by L. Schmeidler
Monday, June 30, 2014
Request for Proposals: WFH World Bleeding Disorders Registry 0 L. Schmeidler The World Federation of Hemophilia (WFH) is seeking an academic or non-profit institution to develop, implement, and maintain a web-based data system for an international, multi-centre, observational World Bleeding Disorders Registry (WBDR).  The registry will house encrypted bleeding disorder-related patient data from participating hemophilia treatment centres (HTC) around the world.  The intent is to develop a database of high-quality real-world data on patients with bleeding disorders to advance the understanding of bleeding disorders worldwide. For more information and to view the Request for Proposal (RFP), please visit: www.wfh.org/en/our-work/epidemiological-research The Proposal submission deadline is Tuesday, February 28, 2017.  Potential candidates are requested to submit a Declaration of Interest by Tuesday, January 31, 2017.  Inquiries should be directed to Donna Coffin, WFH Director of Research & Public Policy: dcoffin@wfh.org
by L. Schmeidler
Wednesday, January 18, 2017
SSC 2016 Montpellier Program 0 G. Young Dear Hemophilia and Rare Bleeding Disorders Community, As we begin our preparations for the 2016 SSC Meeting in Montpellier, I welcome your comments and especially your suggestions for the program. Rest assured that your recommendations will be taken seriously by the co-chairs and I. We hope to see you all there at the end of May.Thanks, Guy Guy YoungChair, Factor VIII, Factor, IX and Rare Bleeding Disorders SSC
by G. Young
Monday, September 28, 2015
Comments requested: Safety Evaluation Study Design 0 F. Peyvandi The members of the “Standardisation of post-registration surveillance” project group drafted a minimal data collection scheme starting from the analysis of the available registries/databases. It aims at collecting information on safety on patients using standard or new drugs in order to carry on a post marketing surveillance. This document contains questions related to the period of post-registration study and also to a second longer period of observation. The first part should last 100 ED using the inhibitor testing schedule currently required by EMA for all patients who start to use a new product. The second part is the collection of information of any adverse event, i.e. every 6 months for a longer period of time (1-3 years or for the entire life of patients). We would like to receive comments from scientific community. Please see the attached documents and make comments on this post.
by F. Peyvandi
Tuesday, July 21, 2015
Practice and Quality Management of Genetic Assays for Haemophilia A and B 0 P. Jenkins We have developed a questionnaire to survey of current practices in laboratories performing molecular diagnosis of haemophilia A and haemophilia B. Please participate and send to your colleagues, you can participate in the survey here.The aim of the survey is to determine current practice, encourage the development of appropriate quality assurance and harmonise current practices especially the reporting of genetic results. All responses will be treated in the strictest confidence. There is no ‘right’ or ‘wrong’ response; the aim is to capture an overview of the current practice internationally. Results and feedback will be analysed and referred to by nation states and countries and not to individual laboratories. Many thanks for your participation!P.V. Jenkins (Ph.D)Chief Molecular BiologistNational Centre for Hereditary Coagulation DisordersDublin IRE
by P. Jenkins
Thursday, April 17, 2014
2014 Milwakee Agenda 1 L. Schmeidler The agenda for the Factor VIII and IX subcommittee at SSC 2014 is now available. There will be 2 sessions for Factor VIII and IX, to view the topics for discussion, click on either day 1 or day 2. We look forward to seeing you in Milwaukee!
by L. Schmeidler
Wednesday, February 19, 2014
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