Facilitating research to increase knowledge and improve care.

At ATHN, we proudly collaborate with researchers to facilitate a variety of studies through our network of over 135 federally funded hemophilia treatment centers (HTCs). ATHN offers data and samples from: The ATHNdataset, Community Counts, the CDC Public Health Surveillance for Bleeding Disorders project, and My Life, Our Future; as well as study implementation and support services, scientific leadership, and funding opportunities. For sponsors, the synergy created by working through ATHN helps reduce time, costs, and hassles of project start-up.

ATHN has research capabilities that can be mixed and matched to meet your specific study needs.

  1. Datasets and biologic samples offer study-specific data and research repository samples drawn from the materials that have been and continue to be collected through projects like the ATHNdataset, Community Counts, the CDC Public Health Surveillance for Bleeding Disorders project, and My Life, Our Future.
  2. Study implementation and support services, including:

    1. Electronic Data Capture
      ATHN provides standardized, web-based applications to our network of over 135 federally funded HTCs that support clinical data management (ATHN Clinical Manager) and study data collection and submission (ATHN Study Manager). Seamless integration between these applications ensures that relevant clinical data can be leveraged to populate electronic case report forms. Leveraging data across applications maximizes efficiency and reduces errors.
    2. Data Management Services
      ATHN services range from feasibility assessments and power calculations to the development of electronic study forms, coding, and validation, through status reporting, biostatistical analyses and delivery of the final dataset. By providing comprehensive and coordinated support to researchers, participating sites, and stakeholders, ATHN helps ensure that findings are accurate, complete, and timely. All study data is securely stored in a commercial-grade hosting environment, backed by a disaster recovery system.
    3. Study Management
      ATHN offers services across the research study timeline and throughout the study life cycle such as supporting sites with IRB submissions, assisting researchers with preparing and compiling study-related data, reports and documents, monitoring the progress of each study, assuring compliance with relevant regulations, and validating accuracy of the data.
    4. Communications Services
      ATHN's communications and community relations team assists with educational and recruitment materials for patients, physicians, site staff, and advocacy groups to help achieve study-specific enrollment and engagement goals; translations of study materials, if needed; and also assists with manuscript and poster development for publication and dissemination of study milestones and results. A study-specific document repository keeps all documents at the fingertips of study teams.
    5. Administrative Services
      ATHN offers project administration including the use of standard contracts and data sharing agreements, meeting coordination, and project financial management by staff that work with ATHN-affiliated HTCs on a regular basis.
  3. Network of sites and scientific leadership – ATHN's relationship with the network of HTCs and their regional leadership facilitates opportunities for new clinical research and surveillance projects that are nationwide and/or regional. This network is comprised of centers of excellence from across the country with a long history of collaboration. A study-specific committee focused on the research question drives each project. ATHN's Board of Directors and Research Committee provide fiscal and scientific leadership. In addition, the broad base of medical directors and staff at HTCs provide input, and ultimately implement studies to support long-term and short-term research goals.
  4. Funding opportunities – ATHN provides funding opportunities to support research projects designed to transform the care of patients with bleeding and clotting disorders. One of those is the DREAM Award, which supports young investigators at ATHN-affiliated HTCs, working under the guidance of experienced mentors. Another is the CARE Award, offered to nurses, social workers, and other members of the HTC interdisciplinary care team.

Each of ATHN's capabilities play a key role throughout the lifecycle of a research project as noted in the following:

Lifecycle of a Research Project

  1. Project Development – Datasets and Sample Repository, Sites and Scientific Leadership, Funding (if available), Administration, Electronic Data Capture, Data Management Services
  2. Project Initiation – Study Management, Regulatory Assistance, Data Management Services
  3. Project Execution – Study Management, Data Management Services, Communication Services
  4. Project Close Out – Data Management Services (for biostatistical analysis and for dissemination of results in publications and posters) and Communication Services (to inform all stakeholders including providers and patients using a wide-range of communication pathways)

ATHN Resources for Researchers

The following key resources are available to researchers to assist in the design of a study, create study-specific electronic forms, and expedite their development:

  • ATHNdataset Core Data Elements
    Lists the breadth of the core data that makes up the ATHNdataset
  • ATHN Data Dictionary
    Provides a definition and description of each data element offering insight into the type of data represented, acceptable values and how that element has been used
  • ATHN Question Library
    A web-based tool that contains a sampling of the standardized questions that are being used for existing ATHN studies and projects

If you are interested in working with ATHN in a research capacity, please email us at info@athn.org.