It is essential to acknowledge some of the challenges faced by investigators when evaluating disease severity in hidradenitis suppurativa (HS) trials using the currently available outcome measures. These challenges extend to rare and uncommon diseases, where the absence of robust, rigorously developed, and validated measures can deter substantial investments from companies. A notable global research organization dedicated to addressing these issues is the CHORD Cousin Collaboration (C3).
C3’s central mission revolves around the development and implementation of Core Outcome Sets (COS) for clinical trials in the realm of dermatological diseases, with the overarching goal of enhancing patient care. This initiative is not limited to HS alone but encompasses a broader spectrum of dermatological conditions, including pyoderma gangrenosum, vitiligo, eczema, and more.
Operates a consortium of over 20 COS groups, including:
- HOME (eczema)
- HiSTORIC (HS)
- VOICE (vitiligo)
- UPGRADE (pyoderma gangrenosum)
- COMPPASS (pustular psoriasis)
These collaborative initiatives hold the potential to revolutionize the landscape of dermatology research and drug development.
C3 HiSTORIC: Shaping the Future of HS Assessment
C3’s emphasis on HS is channeled through a group known as Hidradenitis Suppurativa Core Outcomes Set International Collaboration (HiSTORIC).
Within this group, dedicated efforts are underway to refine and develop measures that resonate with the perspectives and needs of various stakeholders, most notably, patients themselves. The goal of this initiative is to craft measures that not only encapsulate the vital aspects of HS assessment but also align with industry interests and methodological rigor.
This comprehensive approach aims to establish a COS for medical and procedural interventional trials in HS. By striving to create measures that resonate with those affected by HS, the HiSTORIC group aims to drive advancements in research and therapeutic interventions, ultimately prolonging the lives of HS patients while improving their overall quality of life.
In summary, the collaborative efforts led by organizations such as C3 and HiSTORIC highlight a fundamental shift in the approach to HS assessment. Acknowledging the need for well-defined, validated measures, these initiatives seek to renew interest and investment of improved treatments for HS and related dermatological conditions. In doing so, they offer the prospect of a brighter future for individuals dealing with the challenges of these diseases. This exemplifies the potency of collective action and collaboration in the pursuit of innovative solutions.
