All requests for data and/or analysis from the International Thoracic Organ Transplant (TTX) Registry must be submitted using the ISHLT Data/Analysis Request Form. Requests are categorized and processed as described below.
DATA REQUESTS / REPORTS
These are simple requests for explanation or additional detail about data in Registry reports, requests for standard deidentified datasets, or requests for report generation that do not require significant involvement of the Registry biostatistician. Generally, these involve less than 6 hours of time to prepare and responses are provided within 4 weeks. Individuals submitting these requests are not required to be ISHLT members. Priority of response is given first to Society members.
Individuals making these requests must sign a statement agreeing that presentation or publication of the information will be accompanied by appropriate citation(s) and acknowledgment of the ISHLT International Thoracic Organ Transplant (TTX) Registry as the source of the data. Individuals requesting standard deidentified datasets will be required to sign a Data Use Agreement (DUA) before receiving the dataset.
Data studies usually take more than 6 hours to complete and require significant involvement of the TTX Registry biostatistician. Requests for data studies are fulfilled only for members of the Society, with priority given to those whose institution is an active contributor of data. Requests for data studies are placed on the agenda for the next TTX Registry Steering Committee Conference Call for consideration. Once approved, a TTX Registry Steering Committee member may be assigned to consult on the study. The requestor may choose to have the TTX Registry biostatistician carry out the analysis. A fee for this service may apply, in which case the requestor will be asked to sign a contract for the analysis work. Alternatively, the requestor may choose to conduct the analysis at his or her own institution. In the latter case, the requestor will be required to sign a Data Use Agreement (DUA) before the project may begin/dataset may be provided.
For extensive studies, the Registry Steering Committee may recommend that the requestor complete a formal application for a Transplant Early Career Registry Award which provides funding to statistical analyses.