Eve Kakudji – My experience as an RDDC Fellow

I applied for the RDDC fellowship to deepen my understanding of health disparities and learn how to promote health equity within the rare disease community. This fellowship allowed me to meet these goals and actively contribute to eliminating health disparities.

As a RDDC fellow, I had the chance to access eight educational modules specifically designed for the current fellow to learn more about the rare disease experience, the impact of policy, specific rare diseases, and health equity in diverse contexts. The modules that I would like to highlight in this post are the “The rare disease experience”, “Cultural competency and cultural humility”, and “Disparities in clinical trial diversity” modules. 

1. The Rare disease experience: This module taught me about the challenges that rare disease patients face. As a molecular and cell biologist working in a lab setting, I do not have direct contact with patients, and I was excited that being an RDDC fellow would change that. This module highlighted the long and difficult diagnostic process that rare disease patients go through. It also went over the difficulties of finding patients for clinical trials, which leads to rare diseases clinical trials being longer than common diseases clinical trials. In addition to feeling more educated about the challenges of living with a rare disease, this module motivated me to continue working hard on my research, as it will hopefully benefit patients in the future.
   
   
2. Cultural competency and cultural humility: This module was highly instructive as I had never been introduced to these concepts before. I learned that cultural competency is a continuum referring to the ability to work effectively in cross-cultural situations. Cultural humility is about self-reflection and acknowledging your own biases. As I learned about these concepts, I did the exercise of seeing how I could apply them in my day-to-day life. As a molecular and cell biology graduate student, I am performing research and teaching undergraduate students. For both of these roles, I have to work effectively with people from different backgrounds, applying cultural competency. As an instructor, I have to create an environment in which everyone is comfortable and make sure that I have no biases regarding the ability of a student to succeed, which relates to both cultural competency and humility.
   
   
3. Disparities in clinical trial diversity: This last module was a nice introduction to the main project I have contributed to as an RDDC fellow, which focuses on diversity in rare disease clinical studies. This module emphasized the importance of health equity in clinical trials. Indeed, the under-representation of certain racial and ethnic groups in clinical studies hinders the applicability of treatment and diagnostic advancements. Equitable enrollments of patients in clinical studies are critical for everyone to benefit from the outcomes of these studies.

My fellowship project aimed to describe the current state of diversity in rare diseases clinical studies. Little data exist on diversity in rare disease studies while this is a critical step to understand which areas need improvement, and to highlight the potential disparities existing in these studies.

To accomplish our goal, we performed an observational study known as a meta-analysis. Our study included rare disease studies from the Rare Disease Clinical Research Network (RDCRN), a program facilitating rare disease research by promoting and facilitating collaboration among physicians, patients, and researchers. Data collection started in 2004, and all RDCRN studies included are still ongoing. To assess the diversity of the RDCRN studies and to account for their timeframe, we compared the enrollment data of these studies to the U.S. Census data from 2000, 2010, and 2020. We analyzed the observed racial and ethnic enrollment and compared it to what would have been expected based on the U.S. population data to highlight potential disparities. Additionally, we used multiple metrics to have a robust analysis and determine the racial and ethnic groups that tend to be under-represented in these rare disease studies. 

Our meta-analysis provides highly needed insights into the current state of diversity in rare disease clinical trials and has the potential to drive meaningful changes in the field. We look forward to sharing our findings with as many audiences as possible.

Thanks to this project, I actively contributed to improving health equity. In addition to all the learnings I had with this project, I had the opportunity to meet awesome people and collaborate with a variety of new groups. 

In conclusion, the RDDC fellowship was an incredible experience that helped me grow as a scientist and person. I cannot wait to continue working on eliminating health disparities and to follow the journey of future RDDC fellows.

Eve