Request for Applications: Registry Implementation

The National Organization for Rare Disorders (NORD) announces a request for applications for the implementation of up to four new patient registries on the IAMRARE platform. Funding is made available through the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), a collaborative agreement with the Critical Path Institute funded by the U.S. Food and Drug Administration.   
 
The IAMRARE Platform hosts registries that are sponsored by patient advocacy organizations for the purpose of collecting patient reported data. For more information visit https://rarediseases.org/iamrare-registry-program/.   
 
Successful applicants will actively work with NORD, beginning in April 2023, to create and launch a patient registry at no cost to the sponsoring organization. NORD will build and host the registry site and will provide training to registry sponsors as they establish a registry advisory board, develop a study protocol, build and customize surveys, engage in the IRB review process, and set criteria for the sharing of data collected by the registry.  
 
Applications from organizations who meet the criteria to create a new registry or migrate an existing registry from another platform will be considered.   
 
The application requires responses to the following questions:
  • Name of Organization  
  • Key Contact  
  • Name  
  • Title  
  • Phone Number  
  • Email Address  
  • What year did your organization become a registered 501c3 non-profit? 
  • Project Manager  
  • Medical, Scientific, or Disease Experts to support question development 
  • Name of disease or diseases registry will include  
  • What is your best estimate of the number of people with this disease(s) in the US? Globally?   
  • How many individuals with the disease or their families and friends are active in your organization?  How many people do you reach via email, social media, or other communication methods?  
  • Please describe what is currently known about the symptoms, disease progressions and prognosis for individuals with the disease. 
  • How would developing a registry as part of this project help the disease population?  
  • Is there an existing natural history study or patient registry for your disease community? If yes, please tell us why another study would be beneficial.  
  • Are you currently collecting any disease information from your members via a survey? Have you collected any disease information from your members via a past survey? If so, please tell us more about these efforts.  
  • Are there any existing treatments or treatments currently being developed or under investigation? 
 
17% of survey complete.

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