The Histiocytosis Association Research Program operates very much on a “parallel highway” – funding grants for laboratory research, financially supporting clinical trials, and managing and participating in the evolution of the Histiocyte Society. All of these functions make research possible. It is a concept known as “bench to bedside” – translating research at the “bench” in the laboratory into clinical trials, or at the “bedside.” The Association is extremely proud to be leading the search for a cure while ensuring that patients are being treated today.
For more than 20 years, the Histiocytosis Association has served as a partner, secretariat and the primary source of funding for the Histiocyte Society. The Association’s support of the Society includes:
- Facilitating and participating in strategic planning initiatives,
- Aiding in the development of organizational guidelines and operating procedures,
- Managing the overall organizational, administrative and financial operations,
- Developing, producing and distributing publications like the Society annual newsletter and membership directory;
- Building, developing and maintaining the organization and annual meeting websites;
- Facilitating communication between Society members and the Executive Board, and
- Organizing and managing the Society’s annual scientific and Executive Board meetings.
Conducting these activities alleviates the Society’s leadership of the administrative duties associated with running a volunteer-based, nonprofit organization and allows them to focus solely on research and treatment.
The Association continues its efforts to support scientific endeavors by promoting, attending and sponsoring medical education initiatives and meetings. Through a formal funding agreement, the Association ensures that recipients of grant awards share research findings with the medical community by publishing their work in professional journals. The goal of these efforts is to make the medical community more aware of current information regarding the diagnosis, treatment and research of histiocytic disorders and to recruit new physicians to join the search for a cure.
Through its involvement with the Histiocyte Society’s clinical trials, the Association has the opportunity to directly participate in ongoing research efforts. For more than eight years, the Association office served as the North American Study Center for the LCH-III Clinical Trial. In this role the Association provided a constant venue for data collection, patient entry and updates, and administrative oversight for the international study. Though the study is now closed for new patient enrollment, the Association continues to pursue follow-up data for patients that were registered on the study.
The Association also supported the LCH-III Clinical Trial by providing financial reimbursement to medical institutions enrolling patients on the study, a practice common and expected in the medical community. This compensation helps to defray administrative costs associated with patient registration and encourages participation in a study. The Association will continue to provide this support to institutions that register patients on the LCH-IV Clinical Trial.
The Association is pleased to continue its support of Histiocyte Society clinical trials by providing funds for the development and maintenance of a state-of-the-art Clinical Trials Database System for the Histiocyte Society. This system will house all future Society studies beginning with the LCH-IV. The technology behind the system allows for data to be collected more easily and efficiently than in past studies. Study coordinators can then use the database infrastructure to analyze that data and share their findings with the medical community and public more quickly than ever before.
A new pilot clinical trial for the treatment of HLH, called "HIT HLH," has opened in the U.S. at a network of participating sites (see www.clinicaltrials.gov and www.histio.org/HITHLHtrial) and a companion study is expected to open in Europe soon. This protocol combines two effective strategies for HLH treatment. In order to participate in this trial, patients must be treated at a participating center.
You know from experience how rare these diseases are but there is something that you may not be aware of and that you need to know. It is extremely difficult for scientists to obtain tissue samples for their work. Samples that could further unlock the mysteries of how these diseases work and how they can be cured!
The histiocytic disorders are just too rare and sharing of available tissues between scientists is near impossible. As the National Disease Research Interchange (NDRI) states, "Researchers need tissue to make discoveries that will lead to new treatments and a cure." The Association has been very concerned about this shortage of available tissue and we recognize that many scientists may have been held back in their research efforts because of this
The exciting news is that the Histiocytosis Association has been able to negotiate a partnership with the NDRI to collect tissue, store it and make it available to scientists working on important research. This effort will broaden the scope of research and involve new scientists in the effort to advance knowledge. The lack of available tissue for research has been a huge stumbling block and this partnership completes the research initiative.
Learn more about "Making the Difference: Patients Seizing the Power to Advance Research."