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Scientific Initiatives

Focusing on scientific initiatives associated with these diseases, the Association’s Research Program seeks to attain its goal of a cure through a variety of efforts, the foremost being the direct funding of both basic and clinical scientific research projects. While this element is most vital, the program consists of other, important elements listed below.

  • Serving as the Secretariat and headquarters for the Histiocyte Society, an international group of physicians and scientists committed to improving the lives of patients with histiocytic disorders by conducting clinical and basic research into the causes and treatment options. The Association offered to serve in this capacity more than 20 years ago in order to alleviate Society members from the administrative duties associated with running a volunteer organization, allowing them to focus solely on research and treatment of histiocytic disorders. As Secretariat, the Association is responsible for the every-day administrative functions of managing the Society that include: collecting membership dues, distributing materials and publications, newsletter production, development and maintenance of the Society website, facilitating communication between members and the Society’s Executive Board, and planning and managing annual meetings.

  • Sponsoring medical education initiatives in order to make the medical community more aware of the diagnosis, treatment, and research of histiocytic disorders.

  • Directly participating in specific research projects whenever the opportunity is afforded.

  • Serving as the North American Study Center for the LCH III Clinical Trial in order to provide a constant venue for data collection, entry and administration for the international study. The Association also provides financial reimbursement to medical institutions enrolling patients on the study as a means of encouraging participation.

  • Advocating the need for patient registries within the histiocytic disorders community. The first patient registry for Erdheim-Chester Disease, a rare, non-langerhans histiocytic disorder, was established in November 2006 and will serve as a model for future registries.

  • Ensuring the publication of scientific information in prominent medical journals of information learned through Association-funded research projects.

  • Distributing active treatment protocols to physicians in order to facilitate improved patient care around the world.

  • Funding the initiative to create a Clinical Trials Database System for the Histiocyte Society. This system will house all current and future studies, including one focusing on endocrinology and late effects. It will also have the capacity to accommodate patient registries.

 

Copyright 2007 Histiocytosis Association of America
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