Hairy Cell Leukemia Foundation
Avec®: Increasing the speed and robustness of research in rare disease by fluidly connecting investigators with disparate data—without disrupting heterogeneous work flows.
Gathering data in rare disease
Hairy Cell Leukemia is a relatively rare form of chronic adult leukemia. Unfortunately, in rare disease states, the availability of necessary data is often limited, particularly when it is necessary to engage heterogeneous groups of sites in order to access sufficiently large patient populations.
Connecting data in rare disease is especially crucial to progress in research, understanding, and treatment. The design and execution of effective clinical studies requires access to high quality, longitudinal data. In most instances, such data are collected, formalized, stored, and retrieved using project- or organization-specific disease registries or data warehouses. Often, in a rare disease setting, organizational and policy barriers often preclude the use of centralized repositories.
Avec® is making it possible for researchers and practitioners working on this rare disease to access larger and more impactful populations of patients than ever before.
Bridging global data sites
Signet Accel partnered with the 18-site international Hairy Cell Leukemia Research Foundation (HCL-RF), utilizing Avec® to bring true interoperability to the fight against cancer and address these challenges in the specific domain of Hairy Cell Leukemia (HCL).
Avec® enables data sharing and clinical study designs that span patients and data sets at all 18 sites that make up the HCL-RF, thus providing access to a previously unachievable number and diversity of patients with this disease. The resulting and innovative platform for HCL research is the HCL Research Data Repository (HCL-RDR).
The architectural model employed by the HCL-RDR utilizes Avec® to enable the federated query of geographically distributed data sources in order to create a virtual data repository. In this model, data is exchanged and rendered via encrypted channels and the Avec™ query language, which is executed using a federated query processor (FQP). This model has been implemented using the Avec® platform, and is currently being evaluated for deployment to all HCL-RF sites. A novel feature supporting the ability to rapidly “stand up” the HCL-RDR has been the provision of Avec® data sharing “appliances,” which are expressly intended to reduce the technical and operational overhead of deploying a SOA-based data sharing service while simultaneously allowing participating sites to maintain full control of the type and nature of data being shared with other organizations or entities. Finally, through the development and deployment of a simple, GUI query construction and data discovery portal, leveraging modern, web-based technologies, the HCL-RDR allows scientific end-users with appropriate privileges to quickly and easily discover and query distributed data sets.
Accelerating critical research
The use of the Avec® platform as part of the HCL-RF’s efforts is making it possible for researchers and practitioners working on this rare disease to access larger and more impactful populations of patients than has previously been possible. This, in turn, accelerates critical research towards improved therapies and treatment options for patients diagnosed with this rare cancer.