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Parties interested in participating in the GRDR pilot project can submit background information about their organization and the rare disease(s) or condition(s) that they represent for consideration by the project’s selection committee. Responses to the RFI will be accepted through this website. Users will be asked to create a password protected account prior to submitting their information.

Who May Respond

Responses are requested from patient organizations that do not have a patient registry to assist in testing the GRDR and in the implementation of the ORDR Common Data Elements (CDEs) when establishing new patient registries.These organizations will participate in the development and promotion of a new patient registry for their rare disease. The GRDR program will fund the development and hosting of the registry during the pilot program. Thereafter, the patient registry is expected to be self-sustainable.

Responses are also requested from patient organizations that have an existing patient registry to integrate their de-identified data into the GRDR to evaluate the data mapping and data export/import processes.The GRDR team will assist these patient organizations in mapping their existing registry data to the CDEs. Participating organizations (with patient registries) must have a means to export their de-identified registry data into a specified data format that will facilitate loading the data into the GRDR on a regular basis for the data repository portion of the pilot program.

Further Information

The Request for Information (RFI) will be posted on the federal register for 30 days from Feb. 10 through March 10. This RFI will be published in the federal register under “Document number 2012-03155, Category NOTICES”. No responses will be accepted after March 10, 2012 5:00PM EDT.

All responses must be submitted via this website. An online form will be available to submit the requested information. Submitters are requested not to exceed the number of characters indicated on the online form. Submitted information will not be considered confidential although each submission will be stored using a login and a password.

This RFI notice provides information and selection criteria only. It should not be construed as a solicitation or as an obligation on the part of the Federal Government, the NIH, or the ORDR. The ORDR does not intend to make any awards to pay for the preparation of any information submitted or for the Government's use of such information.

ORDR will use the information submitted in response to this RFI at its discretion and will not provide comments to any responder’s submission. However, names of patient organizations that are selected in response to this RFI will be posted on this website. The ORDR may contact any responder for the sole purpose of enhancing the ORDR’s understanding of the RFI submission. Respondents will receive an automated email confirmation acknowledging receipt of their response, but will not receive individualized feedback. No proprietary, classified, confidential, or sensitive information should be included in your response.