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SSC: Factor VIII, Factor IX & Rare Coagulation Disorder
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Factor VIII, Factor IX and Rare Coagulation Disorders

The Factor VIII, Factor IX and Rare Coagulation Disorders Subcommittee has the mission of providing a forum for consideration of practical issues related to haemophilia and other rare bleeding disorders, provide state of the art knowledge regarding the diagnosis and management of these disorders, and conduct projects that aim to standardize and harmonize available laboratory evaluation and clinical care measures for the assessment of therapeutic products and clinical outcomes.

If you are interested in the subcommittee and want to follow its activity, please click "join group" above to sign up as a member (follower). 

Mandate

  • To address issues of practical importance to the research community in the field.
  • To evaluate existing data, determine issues for which data is missing or deficient, identify areas of controversy or pressing clinical need and discuss methodologic approaches to answer questions raised.
  • To create international collaborations for the purpose of planning and executing projects related to the defined needs in the field.
  • To suggest or organize collaborative studies as a result of these activities.
  • To generate, publish and distribute reports, recommendations and other documents concerning the above.
  • To develop laboratory standards, methods, and nomenclature if appropriate.

Role

The subcommittee appoints experts into project groups with specific mandates:

  • To evaluate and standardize definition of clinical and laboratory criteria to assess the clinical severity and effectiveness of therapy
  • Standardization of the currently recommended methodologies for standard coagulation assays, global hemostasis tests and genetic analysis to assess their application in different conditions
  • To evaluate current and upcoming treatment products to prepare recommendations on their best clinical use and to foster the development of more effective products.
  • To provide recommendations for optimal and practical pre- and post- licensure clinical trial design for the new clotting factor concentrates.

Such groups work over 1-2 years, review the available information in the literature and in practice and prepare recommendations to be published as SSC communication. See specific form of each project.

If you are a member of the Society and would like to know how to participate in the work of this group, please join the group to receive updates on activity or submit an Expression of Interest Form to the Chairman or any of the Co-Chairmen. We would be pleased to learn of your interest.

Projects

Official Communication

Recent Forum Activity
Request for Proposals: WFH World Bleeding Disorders Registry
Posted by: Lacey Schmeidler, Wednesday, January 18, 2017
Forum: General Discussion
2016 Annual Minutes
Posted by: Guy Young, Wednesday, June 8, 2016
Forum: Annual Minutes
SSC 2016 Montpellier Program
Posted by: Guy Young, Monday, September 28, 2015
Forum: General Discussion
Comments requested: Safety Evaluation Study Design
Posted by: Flora Peyvandi, Tuesday, July 21, 2015
Forum: General Discussion
Comments requested: prophylaxis in boys with severe hemophilia
Posted by: Lacey Schmeidler, Monday, July 20, 2015
Forum: General Discussion
 View All Forums »

Related Group News

Participate in the New SSC Registry on Massive Pregnancy-Related Pulmonary Embolism (MAPP)
Posted in Opportunities for Participation, Monday, June 3, 2019

The SSC Subcommittee on Women's Health in Thrombosis and Hemostasis is supporting the launch of a new project: the Massive Pregnancy-Related Pulmonary embolism (MAPP) registry. Treating ... more »

 View All News »

Chairman
Johnny N. Mahlangu
Co-Chair
Sabine I. Heine
Co-Chair
Alfonso Iorio
Co-Chair
Maria Elisa Mancuso
Co-Chair
Tarek Owaidah
Co-Chair
John J. Pasi
Co-Chair
Savita Rangarajan

 

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