Types of Data Requests
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Patient-Counseling Data Request
Patient-counseling requests are made by a physician, Transplant Coordinator or NMDP staff on behalf of a patient. These data can only be used for patient counseling, and cannot be published, presented or electronically posted without the prior written permission of the NMDP. These requests receive the highest priority.
- Survival data
For example: survival curves that show the outcome of transplants, usually within certain parameters, such as recipient age, diagnosis or disease status.
- Demographic data
For example: data showing how many transplants have been performed for a certain diagnosis or for recipients of a certain age.
One-Time (Focused) Data Request
One-time (focused) data requests are made by individuals for the purpose of preparing review articles, presentations or for other similar uses. Data for such requests are generally of limited scope and would not ordinarily involve any iterative requests for additional data or modifications after the original request is submitted. Requests requiring analysis, additional data or modifications after the initial request would be Study Proposals. Release of data may require the prior approval of one or both of the NMDP scientific committees (Histocompatibility Committee or Research and Publications Committee). Data approved for release to NMDP member centers or to nonprofit organizations will be provided free of charge. Data approved for release to for-profit organizations will be provided upon reimbursement of the NMDP’s costs for services.
- Outcomes data
For example: survival curves and other data showing the outcome of transplants, usually within certain parameters, such as recipient age, diagnosis or disease status. These data require review and approval of the NMDP scientific committee(s) before they will be released for publication, presentation or electronic posting.
- Demographic data
For example: data showing how many transplants have been performed for a certain diagnosis or for recipients of a certain age. Prior approval of the NMDP scientific committee(s) is not required for release of these data.
- Restrictions
- Journal articles
A journal article is any document submitted to a professional journal listed in the Index Medicus. All material prepared for submission to a professional journal must be submitted to the NMDP Research Department for review and approval by one or both of the scientific committees. This material must be submitted to the NMDP Research Department at least 10 working days prior to submission for publication.
- Presentations
A presentation is any oral communication in a local, regional, national or international forum other than an internal presentation given at the presenter’s own center. Before such a public presentation is made, an abstract or outline of the presentation, along with copies of the slides or overheads to be used, must be submitted to the NMDP Research Department for review and approval by one or both of the scientific committees. This material must be submitted to the NMDP Research Department at least 10 working days prior to the date of the presentation.
- Electronic media
Electronic media includes publication or posting to a web site, electronic journal, or any other medium using the Internet. Before such publication or posting, a copy of the material must be submitted to the NMDP Research Department for review and approval by one or both of the scientific committees. This material must be submitted to the NMDP Research Department at least 10 working days prior to submission for publication.
- Participation
In the case of HLA data, the NMDP will provide the name of a principal investigator who participated in the typing (if both class I and class II data are used, two principal investigators will be named). The named principal investigator(s) should be offered the opportunity to participate as a co-author(s) on publications using these HLA data.
- Attribution
In all cases where material is publicly presented, published or posted, proper attribution of the data to the NMDP is required. Additionally, acknowledgements of the NMDP funding sources, NMDP staff or others who have assisted may be required for certain data. The NMDP will provide the proper attribution at the time the material is reviewed. It is the author’s responsibility to ensure that this information is included. The first reference to the NMDP should be made as "National Marrow Donor Program ® (NMDP)." Thereafter, all references can be to the "NMDP".
- Journal articles
Center-Specific Data Request (Made by NMDP Network Centers Only)
Center-specific requests are only made by staff at NMDP network centers for internal review at the center or for use in treating a specific patient. Data for such requests are generally of limited scope and would not ordinarily involve any iterative requests for additional data or modifications after the original request is submitted. These requests receive high priority.-
Patient-specific or donor-specific data
For example: a physician may request additional data on a specific recipient’s donor. The center may only request data for its own patients, donors or recipient’s donor. -
Center-specific data (center requesting own data)
For example: a center may request a list of its recipients who developed a post-transplant lymphoproliferative disorder and diagnosis dates. -
Center-specific data (center requesting other centers’ data; requires written permission from other centers)
For example: a center requests a list of other centers that have transplanted a recipient with a particular diagnosis. The NMDP must obtain written permission from each of the participating centers to release these data.
Questions? Contact research_web@nmdp.org
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