Activities

Community Engagement: Defeating Sickle Cell Disease by Enrolling in an NIH Gene Therapy Trial: Lynndrick Holmes' Story

In March 2024, the CTSI Community Engagement and Research Program (CERP) hosted an inspiring discussion with Lynndrick Holmes, who shared his journey battling an invisible disease while navigating the complexities of the US healthcare system. Mr. Holmes recounted his experience participating in a lifesaving NIH clinical trial that transformed his chronic sickle cell disease.

Educational Initiatives Working Group

We have organized an internal CIRM-UCLA Educational Initiatives Collaborative Working Group (2024) to discuss opportunities for curricular sharing, best practices, and networking of the respective programs, leadership and trainees. By combining our forces to synergize our efforts, we believe this to be a fruitful collaboration for UCLA and for CIRM. There are multiple levels of stem cell training, thus focusing on the COMPASS, BRIDGES, Alpha Clinic (CTSI-RAP) and GMP educational initiatives is integral to our pilot efforts.

CIRM Trainee Educational Session & Tour

On July 26, 2024, we hosted a half-day of introductory clinical research and regenerative medicine presentations for CIRM Trainees, which also included a tour of our Clinical and Translational Research Center and a newly-built Human Gene and Cell Therapy Facility.

The presentations included:

• History and Overview of Clinical Trials
• Introduction to Regenerative Medicine
• Good Manufacturing Practices
• Tour 1 - New GMP Facility
• Tour 2 - Clinic Facility (CTRC)
• Navigating Clinical Research Careers + Q&A
   

Master Coverage Analysis Alignment Training

In October 2024, a two-day alignment workshop pilot was held to equip Alpha Clinic Network members with a solid understanding of Coverage Analysis and its practical application to cell and gene therapy trials. Participants learned about clinical trial coverage & research billing considerations as well as operational best practices, and had the opportunity to earn a certificate after final assessment and alignment exercise for a stem cell study.

Distinguished Speaker: Dr. Lori E. Crosby, PsyD

In September 2024, we hosted a multi-part event to engage physicians, nurse practitioners and UCLA healthcare staff in a dialogue discussion about sickle cell disease, racial bias and stigma. Dr. Crosby described strategies for addressing medical and racial trauma in the clinic room.

Cayenne Wellness Annual Summit

In September 2024, the Cayenne Wellness Center's 16th Annual Sickle Cell Disease Educational Summit took place as a four-day hybrid event dedicated to increasing awareness and understanding of sickle cell disease and trait. Over 1,000 virtual attendees and 200 in-person participants engaged in informative lectures and discussions covering FDA-approved therapies, advocacy, emergency care and sickle cell trait education.

Navigating Clinical Research Careers Webinar

This annual webinar series encourages individuals to consider entering or advancing their careers in clinical research. Guest speakers and panelists discuss their career journeys that led them to their current UCLA roles.

In November 2024, Dr. Mona AuYoung was our featured guest, discussing Community-Engaged Research and highlighted its impact on Sickle Cell Disease (SCD) along with a panel of experts. The sessions were as follows:

Basics of Community Engaged Research

• Roles in Community Engaged Research
• Community Stakeholder Engagement
• Barriers to Community Engaged Research
• Link Between Community Engaged Research and UCLA Health
• Sharing Research Data with the Community
• Career Matching (transferrable skills)

Sickle Cell Disease

• Pathways to a Career in Sickle Cell Research
• Impact of Sickle Cell Research on Public Health
• Interdisciplinary Collaboration in Sickle Cell Research