Levels of Data
Data collected and managed by the NMDP are assigned a level depending on the content and need for confidentiality. The following table shows the four levels, with examples of each level and what restrictions apply to release of data at each level.
| Level I | |
| Description | Statistics describing the general activity and demographics of the NMDP Registry, search process and transplants. |
| Examples | Number of donors with HLAA, B,DR typing on the Registry. Number of cord blood transplants by year. Number of preliminary searches on behalf of Asian/Pacific Islander patients. Number of stem cell transplants for acute lymphoblastic leukemia in patients less than or equal to 19 years of age. |
| How Released | Access and use are not restricted. |
| Level II | |
| Description | Statistics describing the clinical outcome of NMDP-facilitated unrelated stem cell transplants or outcome of donor stem cell collection. |
| Examples | Patient counseling: Survival among all chronic myelogenous leukemia patients under the age of 50 transplanted in first chronic phase between 1998 and 2000. Other: Outcome of unrelated donor stem cell transplant for acute lymphoblastic leukemia. Donor: Donor outcome after receiving Filgrastim injections for peripheral blood stem cell donation. |
| How Released | Except for patient-counseling requests, access to and publication of these data will be carefully reviewed by designates of the NMDP Research and Publications Committee before release or approval. |
| Level III | |
| Description | Any donor or patient information that is, or could potentially be, linked to specific donors or patients. Any center-specific data that are, or could potentially be, linked to a specific center. |
| Examples | Transplant date and diagnosis for all patients transplanted at a specific center between 1999 and 2000. Names of transplant centers that have transplanted recipients for acute lymphoblastic leukemia who also have Down’s Syndrome. |
| How Released |
Donor- and patient-specific data will remain confidential. Donor- or patient-specific data, other than data identified by anonymous codes, should not be requested unless it is essential for the care or well-being of a donor or patient. In such situations, distribution of these data shall require approval of the NMDP Medical Director or Chief Medical Officer. The Medical Director or Coordinator of an NMDP participating center may request and will be provided access to data collected by the NMDP from his/her own center. Release of a center’s own data does not require prior approval of NMDP committees. As part of its contract requirements with HRSA, the NMDP publishes several reports that include centerspecific data (e.g., Data and Scientific Report of the National Marrow Donor Program). The center-specific data in these reports will be forwarded to the respective medical directors for review and comment prior to publication. Individuals will not be given access to center-specific information other than from their own center without prior written approval of authorized individuals (typically, the center’s medical director) from centers that collected the data unless the center-specific data are in an NMDP published report. |
| Level IV | |
| Description | All donor and recipient HLA typing, including associated demographic data (reported HLA typing, age, race, sex, recipient diagnosis and whether sample is pre- or posttransplant). |
| Examples | HLA-A, B and DR typing results from all African American recipients to determine the frequency and haplotype associations of HLAB44, B42, B70 and B53. |
| How Released | Access and publication will be reviewed for comment and/or approval by designates of the NMDP Histocompatibility Committee. |
Questions? Contact research_web@nmdp.org
| See Also:
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| Additional information available on the marrow.org Web site:
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