NewOrg Leads the Charge in Revolutionizing UDNF’s Patient Data Systems

NewOrg Revamps UDNF's Data Management for Streamlined Case Handling and Enhanced Patient Engagement 

Washington, D.C. - The Undiagnosed Diseases Network Foundation (UDNF) was established to address the pressing challenges faced by individuals suffering from undiagnosed and ultra-rare diseases. Emerging from the pioneering work of the National Institutes of Health’s Undiagnosed Diseases Network, UDNF was conceived by a dedicated group of patients, family members, and healthcare providers who witnessed firsthand the diagnostic and therapeutic gaps in rare disease medicine. The foundation is committed to expanding research, enhancing diagnostic methodologies, and improving care pathways for this underserved population. UDNF operates with a core set of values that include compassion, innovation, and collaboration, striving to create a healthcare environment that is patient-centered and inclusive. Their vision is a future where no rare condition goes undiagnosed, and every patient receives personalized care and support. By fostering a collaborative network of medical experts, researchers, and patient advocates, UDNF aims to transform the landscape of rare disease healthcare, ensuring that families navigating these challenges have access to the best possible solutions. 
 
Before partnering with NewOrg, UDNF struggled with an inefficient method to document their case management efforts for the Patient Navigation program. The existing system lacked the capability to handle sensitive patient histories securely, as it was not designed for centralized data management. This resulted in significant challenges in maintaining the privacy and accuracy of critical patient information, which is crucial for effectively navigating the complex needs of patients with undiagnosed and rare diseases. Recognizing these challenges, UDNF required a solution that would not only streamline data collection and case management but also ensure that sensitive information was securely managed.

"An organized system like NewOrg isn’t merely a tool; it’s the lifeline of effective navigator-to-patient communication, ensuring every interaction becomes a thread woven into better patient documentation and outcomes.  The UDNF presented its ideal operating documentation system vision to NewOrg, who, in return, created a system that captured the intricate needs of the navigators’ request to capture the care of the ultra-rare and undiagnosed community.  The new system allows for adequate documentation of care.  The development of such a remarkable system is a testament to the dedicated partnership of NewOrg, which provided the UDNF with a system of utilization that was clear, organized, and productive”.  (Christine Siscoe, Patient Navigator)

NewOrg delivered a streamlined case management solution for UDNF's Patient Navigation program, which included: 

• Online Webform: NewOrg developed a Patient Assistance Intake Form that enables individuals interested in the Patient Navigation Program to submit their applications online. This digital submission system allows UDNF to centralize and manage client information effectively. 

• Integrated Case Management System: Upon form submission, the system automatically alerts case managers, ensuring the timely processing of new applications. This integrated system provides case managers with the ability to track demographic details and other critical information from patient submissions directly within the client's record. 

• Enhanced Tracking Capabilities: The system facilitates the tracking of a client's assignment to specific UDNF sites, along with the ability to monitor those who are not yet assigned and may require further assistance or information. 

• File Share Center: NewOrg implemented workflows that utilize the file share center for secure sending of patient consent forms, the release of information forms, and other necessary assessments, streamlining the documentation process. 

• Video Conference Center: The solution includes a workflow that enables navigators to conduct patient meetings through a secure video conference center, enhancing the quality of remote interactions and support. 

About UDNF

Christin Siscoe, MSN, RN, CPN
Patient Navigator
1012 14th Street Northwest Northwest Washington
Washington, #7, Washington, DC 20005
UDNF - udnf.org
Phone: (301) 327-0713
Email: christin@udnf.org

About NewOrg Management System, Inc. 

 NewOrg Management System, Inc. – www.neworg.com  
4000 Albemarle St NW (Ste 200) 
Washington, DC 20016 

NewOrg is a leading software developer providing a cloud-based data management platform for nonprofits and local government/social agencies, with more than 50,000 users in the US & Canada since 2006. Celebrating 15 years providing complete, 100% customized data management for nonprofit organizations and affiliates, NewOrg's integrated software and service approach ensures that our partners improve efficiency, transparency, and sustainability. 

Media Contact: 
Sotiris Koutsoyannis 
Marketing/Communication Specialist 
NewOrg Management System, Inc. 

866-843-2835 x3 

newsroom@neworg.com