Download Data and Materials Distribution Agreement updated 10/13/2005

  The National Heart, Lung, and Blood Institute (NHLBI) and the National Center for Minority Health and Health Disparities (NCMHD), in collaboration with Jackson State University, Tougaloo College, and the University of Mississippi Medical Center, hereinafter referred to as the JHS Institutions, have supported collection of Clinical Data, Genetic Analysis Data, and Biological Materials from participants in the Jackson Heart Study (JHS) since 2000. This clinically and genetically well characterized population represents an ethnic group (African Americans) that has been poorly represented in prior biomedical research despite a disproportionately higher rate of morbidity and mortality from cardiovascular diseases and associated complications. In this regard, the JHS provides a rare and valuable scientific resource, maintained under the joint stewardship of the JHS Institutions and the NHLBI, to study the complex interplay between genetic and environmental factors in disease etiology and in the elimination of ethnic health disparities in the state of Mississippi and the nation. Promoting optimal use of this resource on a national scale will require a large and concerted effort which may exceed the research capacity of currently available investigators in Jackson and other individual study locations. The NHLBI and the researchers it supports have a responsibility to the public and to the scientific community to encourage as rapid scientific progress as possible using these resources, subject to appropriate terms and conditions. In order to take full advantage of such resources and maximize their research value, it is important that samples and data collected with public funds be made available, on appropriate terms and conditions, to the largest possible number of qualified investigators in a timely manner. The NHLBI and the JHS Institutions seek to promote the development of valuable discoveries and inventions beneficial to the public health based upon use of this JHS repository.

The JHS investigators have made a substantial long-term contribution in establishing and maintaining the clinical database and the genetic database and samples and wish to ensure that the contributions of the JHS investigators are appropriately acknowledged. The NHLBI and the JHS Institutions seek to encourage appropriate collaborative relationships by outside investigators with JHS investigators to ensure the highest quality of scientific output. Collaborative efforts are also sought to increase the number of African American and other under-represented minority investigators involved in this type of research with investigators and the education of trainees at the two Historically Black Colleges and Universities, Jackson State University and Tougaloo College, and the University of Mississippi Medical Center. It is recognized that scientists who use the resources of the JHS have a debt to the JHS Community to report research findings through the JHS newsletter, and are encouraged to collaborate with JHS investigators in educational outreach efforts

Clinical Data, Genetic Analysis Data, and/or Biological Materials collected by the JHS have been stripped of all personal identifiers but the limited geographic area from which these participants were drawn and the wealth of descriptive data available on them might make it possible to identify some participants. To protect the confidentiality and privacy of these participants and their families, investigators granted access to these Data and Materials must adhere to the requirements of this Distribution Agreement.

Failure to comply with this Agreement could result in denial of further access to JHS samples and data. Violation of the confidentiality requirements of this agreement may leave requesting investigators liable to legal action on the part of JHS participants, their families, or the United States Government.