Additional questions and responses will be added to this page based on inquiries received to GRDR. Check back regularly for answers to your questions.

About the GRDR Program

Who are the participating organizations in the GRDR pilot program?

There are two types of organizations. One group is with existing registry and the other with no registry.

Will ORDR provide support for exiting registries to upgrade their registry or modify it?

For now, and as described in the GRDR RFI, the program will not provide any financial support to upgrade existing registries. ORDR will provide recommendations and educational material to assist in any way possible. ORDR will also provide a list of vendors, to choose from, that can be provide services for establishing, upgrading or hosting patient registries.

Will GRDR conduct research studies and clinical trial? Will GRDR recruit patients for research studies and clinical trials?

Only de-identified patient clinical information will be collected and aggregated into GRDR. The data will be available to investigators involved in medical research studies, including clinical trials. GRDR will not recruit patients for clinical trials nor will we develop protocols for clinical research or clinical trials.

Who owns the data collected by GRDR?

Organizations that contribute de-identified patient data into the GRDR are the owners of their submitted data. This includes both organizations that have an existing registry and organizations that have registries that are newly established by GRDR.

Do I need to have an IRB approved consent to participate in the GRDR?

Existing patient registries and organizations that seek to develop a new registry through GRDR should have an IRB approved Informed Consent Form prior to contributing data to the GRDR program. The consent document should include the elements described in the GRDR common consent form template and should include the agreement by the participant to share their de-identified medical information with other the GRDR. Refer to The Informed Consent section of the Program Overview for more information.

Why is curation important for the GRDR pilot program?

Curation, or review and verification of the patient-entered data, standardizes and improves the quality of registry data. Curators work in partnership with the registry’s medical or scientific advisory board to review each patient’s registry answers and abstract key data elements from critical test result reports. Examples of curator actions may include the following: review the answers to the health questionnaire, assess and assign the level of completeness to the patient record, resolve discrepant responses, enter information from submitted genetic test results, etc.

RFI recipients are chosen to participate in a pilot to test the integration of registry data into the GRDR and to use the data for analysis across diseases and registries. To enable pan-disease comparison from the pilot program, the GRDR seeks to establish a uniform level of data verification and requests that all participants conduct data curation prior to submitting data to the rare diseases repository.

What are the benefits for researchers (academic and industry) to use GRDR repository data?

For academic, biotech, and pharmaceutical investigators, GRDR offers a comprehensive rare disease dataset to accelerate single disease and pan-disorder analyses. Benefits include:

• Learn directly from patients and families
• Develop patient cohorts for clinical studies or share information in a targeted manner
• Plan studies using interactive registry maps and feasibility data
• Conduct pan-disease analysis, investigate shared biological pathways and pathway focused therapeutics
• Contribute previously collected de-identified patient data in a publically-accessible resource

What are the benefits for patient advocacy groups to use GRDR repository data?

• Access to pan-disorder data can benefit patient advocacy groups and unite rare disease communities.
• Use pan-disorder data to educate healthcare providers and patient communities
• Quantify the patient community to attract further research and funding

Accessing Your GRDR Account

What if I forgot my username?

On the homepage http://grdr.info, click the link for Forgot Login, near the login fields. Check Lost Username box and enter the email address used to set-up the account. A message that contains the username will be sent to this email address. If you do not have the email address for the account or if you have further difficulty, contact Yaffa Rubinstein at This e-mail address is being protected from spambots. You need JavaScript enabled to view it for further technical support.

What if I forgot my password?

On the homepage http://grdr.info, click the link for Forgot Login, near the Login fields. Check Lost Password and enter the username and the email address used to set-up the account. A message that contains a temporary password will be sent to this email address. Login to the account with the username and temporary password. If you do not have the email address for the account or if you have further difficulty, contact Yaffa Rubinstein at This e-mail address is being protected from spambots. You need JavaScript enabled to view it for further technical support.

How do I change my password?

The password can be reset under the Account Information section. At the top of the website, click My RFI button. Click the blue Manage RFI Response button, and then click the Account Information tab. Enter the password you wish to use and click Save.