Rare diseases may challenge
your organization
It is estimated that there are around 7000 rare diseases affecting about 30 million people.* Currently, treatments are available for ~5% of rare diseases.1
*In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.2
According to the National Organization for Rare Disorders (NORD), individuals with a rare disease may experience "feelings of isolation and of having been abandoned or 'orphaned' by our healthcare system.”3
It is difficult for many clinicians to stay up to date with rare diseases.4 This fuels the demand for tools that integrate new information into decision-making.5*
*Based upon the findings of a 2021 report that resulted from a workshop that brought together leaders from across the healthcare spectrum, including patient advocacy, clinical research, personalized medicine, venture capitalism, and payer organizations. The workshop elicited the opinions of participants; it was not a scientific study.5
Leveraging EHR systems may improve care and mitigate inefficiencies6-9
Use of EHR systems may help6-9:
- Efficiently triage patients
- Enable resource prioritization
- Provide more coordinated care
Best practice alerts and suspect patient lists, for further clinical evaluation, may contribute to improved patient care outcomes, as well as increased efficiency.10
How can Alexion help you?
Alexion provides educational resources to help you leverage your EHR system to help triage suspect rare disease patients for further clinician evaluation through the use of relevant patient history data, best practice alerts, and suspect patient lists. Alexion offers EHR toolkits to support triaging suspect patients for further clinical evaluation.
Explore available EHR toolkits
EHR=electronic health record.
References: 1. National Organization for Rare Disorders (NORD). Orphan drugs in the United States: an examination of patents and orphan drug exclusivity. Accessed November 11, 2021. https://rarediseases.org/wp-content/uploads/2021/03/NORD-Avalere-Report-2021_FNL-1.pdf 2. Orphan drug act—relevant excerpts. United States Food and Drug Administration. Updated August 2013. Accessed November 11, 2021. https://www.fda.gov/industry/designating-orphan-product-drugs-and-biological-products/orphan-drug-act-relevant-excerpts 3. Rare Disease Day: Frequently Asked Questions. Rare Disease Day. Accessed February 16, 2021. https://rarediseases.org/wp-content/uploads/2019/01/RDD- FAQ-2019.pdf 4. Vandeborne L, van Overbeeke E, Dooms M, De Beleyr B, Huys I. Information needs of physicians regarding the diagnosis of rare diseases: a questionnaire-based study in Belgium. Orphanet J Rare Dis. 2019;14(1):99. doi:10.1186/s13023-019-1075-8 5. The Diagnostic Journey for Rare Disease Patients: Scaling Sustainable Solutions. Avalere Health; 2021. Accessed February 16, 2021. https://avalere.com/wp-content/uploads/2021/07/Diagnostic_Journey_for_RD_Patients-June-2021.pdf 6. What are the advantages of electronic health records? HealthIT. Updated May 16, 2019. Accessed February 16, 2021. https://www.healthit.gov/faq/what-are-advantages-electronic-health-records 7. Ben-Assuli O, Sagi D, Leshno M, Ironi A, Ziv A. Improving diagnostic accuracy using EHR in emergency departments: a simulation-based study. J Biomed Inform. 2015;55:31-40. doi:10.1016/j.jbi.2015.03.004 8. Improve care coordination. HealthIT. Updated September 15, 2017. Accessed February 16, 2021. https://www.healthit.gov/topic/health-it-and-health-informationexchangebasics/improve-care-coordination 9. Menachemi N, Collum TH. Benefits and drawbacks of electronic health record systems. Risk Manag Healthc Policy. 2011;4:47-55. doi:10.2147/RMHP.S12985 10. FDASIA Health IT Report: Proposed Strategy and Recommendations for a Risk-Based Framework. United States Food and Drug Administration; 2014. Accessed February 16, 2021. http://www.fda.gov/media/87886/download