International Thoracic Organ Transplant (TTX) Registry

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Accessing ISHLT TTX Registry Data What Data is Available Reserved Analysis Topics Who May Apply How to Apply

The ISHLT International Thoracic Organ Transplant (TTX) Registry makes de-identified research datasets available to ISHLT members who wish to conduct independent analyses of heart and lung transplant outcomes. The ISHLT TTX Registry includes data from Registry partners that have signed data sharing agreements under the current privacy framework, encompassing both historical and newly submitted data.

The TTX Registry will release two de-identified datasets per year: One for heart transplantation, one for lung transplantation and combined heart-lung transplant and are provided in SAS format. Location identifiers will be limited to Europe, North America, and Other Regions of the World. Waitlist data are not yet available. Current datasets support analyses of post-transplant survival outcomes; additional outcome variables are under development.

We strongly encourage investigators to review the TTX Registry Variable List before submitting a proposal to confirm that the data elements needed for their research question are available.

The following topics are reserved for the TTX Registry Steering Committee's planned analyses and are not available for community data requests at this time:

2027 Annual Report focus themes: Mechanical circulatory support and trends in adult and pediatric heart transplantation; ECMO use in adult and pediatric lung transplantation
2028 Annual Report focus theme (planned): Cystic fibrosis trends and outcomes in adult and pediatric lung transplantation

Any current ISHLT member in good standing may submit a data request.

Complete the TTX Registry Data Request Form and submit it to ishlthelp@unos.org. Proposals are reviewed on a rolling monthly basis by the TTX Steering Committee, with pre-review by Registry Associate Directors and a feasibility assessment by the Data Coordinating Center. Investigators can expect to receive a decision within approximately one month of submission.

Approved investigators will receive a data use agreement to execute prior to data release. All analyses must be conducted by the investigator's own team; the Registry does not perform analyses on behalf of requestors.

The International Thoracic Organ Transplant (TTX) Registry was created to provide on-going, current data regarding patient, donor, and transplant characteristics as well as post-transplant outcomes. Our Registry is the only one of its kind. All institutions and countries performing heart, heart-lung, and/or lung transplantation are invited to submit data to the TTX Registry.

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Mission

TThe mission of the TTX Registry is to advance the understanding and outcomes of thoracic transplantation through the systematic collection, analysis, and dissemination of high-quality international data. The Registry provides a collaborative platform for participating centers and investigators to identify trends, evaluate outcomes, conduct meaningful research, and develop evidence-based practices that improve care for patients undergoing thoracic transplantation.

Purpose and Goals

Goals

The primary goal of the TTX Registry is to establish and maintain a comprehensive, high-quality international database of thoracic transplantation activity and outcomes. By ensuring complete, accurate, and consistent data submission, the Registry enables participating centers and investigators to better understand outcomes, identify opportunities for improvement, and contribute to research that advances the field of thoracic transplantation.

Purpose

The TTX Registry seeks to:

Capture comprehensive international data related to thoracic transplantation, including patient characteristics, transplantation activity, management, and outcomes.
Identify risk factors associated with complications, morbidity, mortality, and long-term outcomes.
Improve patient selection and clinical management before and after transplantation.
Evaluate trends and variations in transplantation practices and outcomes across centers and regions.
Generate predictive models and risk-adjustment methodologies to better understand and anticipate patient outcomes.
Provide a robust data foundation for research studies, clinical investigations, publications, and guideline development.
Identify and promote best practices with the goal of improving quality of care and patient outcomes.
Support benchmarking and continuous quality improvement among participating centers.
Facilitate international collaboration and accelerate the development of knowledge in thoracic transplantation.

Why Participate in the TTX Registry?

Benefits to Centers

Support research and publications using a robust, multinational dataset.
Contribute to the development of evidence-based practices and standards in thoracic transplantation.
Identify trends in patient and transplant characteristics to support program planning and resource allocation.
Strengthen your center’s participation in the international transplant community through collaboration and shared learning.

Benefits to ISHLT

Maintain and strengthen a high-quality international thoracic transplantation registry.
Provide a comprehensive data resource to support ISHLT research, education, guidelines, and advocacy initiatives.
Enable researchers to conduct multinational analyses and collaborative studies.
Generate statistical reports and research insights that advance the Society's mission in thoracic transplantation.
Strengthen ISHLT's role as a leader in international transplant outcomes research and quality improvement.

Benefits to the Thoracic Transplantation Community

Improve patient outcomes through greater understanding of risk factors, practices, and outcomes.
Accelerate research and innovation by providing investigators with access to high-quality international data.
Identify and disseminate best practices across transplant programs worldwide.
Establish international benchmarks and standards for thoracic transplantation.
Support evidence-based decision-making for clinicians, programs, researchers, and policymakers.
Foster international collaboration and a shared understanding of challenges and opportunities in thoracic transplantation.
Ultimately, advance the field and improve the lives of patients receiving thoracic transplants.

Data Coordinating Center

The Data Coordinating Center (DCC) for the TTX Registry is the United Network for Organ Sharing (UNOS). UNOS hosts the database and manages the collection and analysis of the data. Questions about the TTX Registry and the data submission process may be directed to ishlthelp@unos.org.

Registry Resources

Registry News

TTX Registry Steering Committee

Five people posing for a photo at ISHLT2023 in Denver

The TTX Registry Steering Committee is responsible for the oversight of the registry's operation and monitoring its ongoing progress.

Questions?
Contact the ISHLT Registry team at ishlthelp@unos.org.