DIVERSITY, EQUALITY & INCLUSION


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3. Financial burden: Diagnosing and managing rare diseases can be financially brdensome. The total cost to society for just 24 rare diseases was $125 million, and the average overall economic brden per patient per year ranged from $, to $,  approimately ten times the cost associated with mass-market diseases, which have an average annual economic burden of $, per patient per year. any rare diseases reire lifelong management, componding the financial strain on families.


Clinical trial research and rare diseases linical trials play a fndamental role in medical research, offering a structured approach to test new treatments before widespread availability. owever, individals affected by rare diseases face barriers and challenges when attempting to participate in clinical trials, exacerbating existing health disparities.


54 | Outsourcing In Clinical Trials


1. Limited trial opportunities: Due to the rarity of these diseases, the nmber of available clinical trials is often limited, reducing opportunities for affected individuals to participate and potentially benefit. The limited number of participants makes meaningful trials difficlt.


2. eterogeneity of rare diseases are diseases encompass diverse genetic, clinical and phenotypic characteristics, making it a challenge to design trials that effectively target the nie featres of each disease.


3. ecritment and retention challenges Attracting and keeping participants for rare disease trials can be tough. Solutions include encouraging research, promoting collaboration and considering adjustments such as adaptive trial designs, allowing modifications based on planned interim data analysis.


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