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NORD Launches Free Data Literacy Course

The National Organization for Rare Disorders (NORD), a foremost nonprofit organization that supports over 30 million Americans living with rare diseases, recently announced the launch of a transformative initiative aiming to empower patients and caregivers in navigating the complexities of health data. This engaging, self-paced online course titled "From Records to Research: Making Sense of Health Data for Rare Diseases" provides essential knowledge designed specifically for individuals managing rare conditions.

The Importance of Data Literacy

In today's data-driven world, understanding health data is crucial, especially for patients and caregivers within the rare disease community. The information often surrounding these conditions can be overwhelming. Patients are frequently tasked with sifting through extensive medical records and understanding complex terminology while advocating for their own health needs or those of their loved ones.

With this challenge in mind, NORD’s new course will equip participants with the skills needed to interpret and utilize health data efficiently. The course, developed in collaboration with the Critical Path Institute (C-Path) and the Food and Drug Administration (FDA), provides a robust framework for understanding how to engage with health data meaningfully.

Course Overview

The course is comprised of four comprehensive modules:

1. Understanding Clinical Data: This module educates participants on the collection of medical information, the essential components of electronic health records, and the key medical terms that are vital for navigating the healthcare system. Additionally, it addresses the critical issue of data privacy protections.

2. Medical Devices and Health Data: Here, participants will learn about various medical devices that collect health data, the mechanisms through which this data is shared, and how it supports accurate diagnosis and treatment.

3. Research and Health Data: This segment dives into clinical study design. It clarifies how scientists collect and analyze data while emphasizing the fundamental need for informed consent before patient participation in studies.

4. How Data Becomes Knowledge to Improve Health: This final module elucidates how medical research influences patient care decisions, the reliability of treatments, and overall health management strategies.

Supporting the Rare Disease Community

NORD recognizes the urgency of empowering rare disease advocates. By enhancing data literacy, the organization aims to support patient advocacy efforts, ensuring that critical funding and policy decisions reflect the genuine needs of the community. In the words of Rebecca Aune, NORD's Director of Education Programs, "With NORD's new data literacy course, patients and their families will be able to make smart decisions regarding participation in research, clinical trials, and the management of their health data, leading to better care and advocacy."

Accessibility and Certification

This course is both mobile-friendly and accessible online, allowing users to engage at their convenience. Furthermore, participants will receive a certificate upon completion, further validating their newfound knowledge and competencies in health data literacy. Notably, the initiative will also be available in Spanish, ensuring broader access for non-English speaking patients and caregivers.

Collaborations and Future Impact

NORD's commitment to education and research advancement is demonstrated through its partnerships, which have made courses like this possible. The program receives additional support from the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), designed to expedite drug development processes for rare conditions.

Through this ambitious educational push, NORD not only aims to bridge gaps in understanding but also strives to foster a more informed and engaged community that can drive scientific innovation.

For more information about the course, visit NORD's RareEDU platform.

About NORD

Established in 1983, the National Organization for Rare Disorders (NORD) stands as an independent, nonpartisan nonprofit organization dedicated to enhancing the health and lives of those affected by rare diseases. In conjunction with over 350 disease-specific member organizations, NORD champions advancements in research, care, and policy tailored to the needs of the rare disease community.