Organizations that meet the eligibility criteria are asked to provide a short description of how they will address the selection criteria which are listed below. Please note that the response for each criterion has a word limit and each criterion will be weighed accordingly as indicated:

1. Have a well-defined, credible vision and purpose for establishing a registry. (300 words, weigh 30 points)
2. Have a good plan to sustain the newly established or already existing registry beyond the 2 years of the pilot project. (150 words, weigh 20 points)
3. Have, or plan to develop, a feasible system to capture patient updates of their medical information as well as updates of patient’s medical information from healthcare providers. (150 words, weigh 10 points)
4. Agree to assist in the translation of their registry into multiple languages as needed to facilitate the inclusion of non-English speaking participants and appear to be capable of providing such assistance. The GRDR will use English only. (150 words, weigh 10 points)
5. Have a good plan for data verification by an individual with a medical background. (150 words, weigh 10 points)
6. Are engaged or willing to collaborate with other organizations serving the same or related diseases. (150 words, weigh 10 points)
7. Have a developed means of communication with the public, e.g. electronic mailing lists, newsletter, website and other social networking media. (150 words, weigh 5 points)
8. Have, or plan for, support to navigate both future registry activities and community outreach. (150 words, weigh 5 points)

Information provided through the responses to the RFI eligibility criteria and selection criteria will be used to review and evaluate the submissions.

The selection committee, comprised of individuals with medical background, patient advocacy leaders, and others, will rank the submissions from the patient groups based on the selection criteria. ORDR will make the final selections of the patient groups based on rare disease categories to achieve maximum distribution of the different rare diseases.  In addition, an effort will be made to ensure that large and small patient organizations will be included, i.e.,  half from organizations that represent a rare disease with more than 2500 patient participants and half from organizations with less than 2500 patient participants (based on hard copy or the electronic contact list).