Ncdb Data Use Agreement

The National Cancer Institute`s Surveillance, Epidemiology, and End Results (SEER) Program operates the National Cancer Database (NCDB), a repository of cancer patient data from hospitals across the United States. The NCDB houses information on more than 34 million cancer cases and is a valuable resource for researchers, healthcare providers, and policymakers alike. However, in order to access this data, users must agree to the NCDB Data Use Agreement.

The NCDB Data Use Agreement outlines the terms and conditions under which the data can be used. It is designed to protect the privacy of the patients whose data is included in the NCDB and to ensure that the data is used for the purposes of advancing cancer research and treatment. The agreement includes provisions covering data security, confidentiality, and appropriate use of the data.

One of the key elements of the agreement is the requirement that users obtain Institutional Review Board (IRB) approval before accessing NCDB data. IRBs are committees that oversee research studies involving human subjects to ensure that they are conducted ethically and in accordance with all applicable laws and regulations. This requirement helps to protect patient privacy by ensuring that the data is only accessed by qualified researchers who have been approved to conduct research on human subjects.

The agreement also stipulates that users must maintain the confidentiality of the data and protect it from unauthorized disclosure. This includes implementing appropriate physical, technical, and administrative safeguards to protect the data from breaches and theft. Additionally, users are prohibited from attempting to re-identify individual patients or using the data for commercial purposes.

Users are also required to acknowledge the contribution of the NCDB in any publications or presentations that result from their use of the data. This helps to ensure that the NCDB receives proper credit for its contributions to cancer research and treatment.

In summary, the NCDB Data Use Agreement is an important tool for protecting patient privacy and ensuring that the data is used in a responsible and ethical manner. Anyone wishing to access NCDB data must agree to the terms of the agreement and obtain IRB approval before beginning their research. By adhering to these guidelines, researchers can help to ensure that the NCDB continues to be a valuable resource for advancing our understanding of cancer and improving patient outcomes.