Clinical Research Learning Institute

August 23-24, 2019
Villanova Conference Center

The CRLI is an intensive program dedicated to educating PALS-caregiver pairs on clinical research and therapy development, while empowering them to be advocates for ALS clinical research, or “Research Ambassadors.”  Our faculty will include ALS experts from the Philadelphia area along with Dr. Lyle Ostrow from Johns Hopkins. The lectures will provide an overview of the clinical research process and include the Biology of ALS, the pipeline and therapy development, clinical trial design, informed consent, ethical considerations, guidance on reading a research paper as well as review advocacy opportunities. The course will cover what barriers there are to enrollment, the importance of the properly done trial and strategies to promote clinical research and ALS awareness.

After completing the program, ALS Research Ambassadors have the tools be effective at advocating to others about ALS as well as the issues and misconceptions surrounding clinical research and help to encourage participation in clinical trials so essential for making progress to a cure. As one participant at a previous Philadelphia CRLI commented: 

“My knowledge level has increased significantly and I feel that I can speak confidently about the issues related to clinical research/trials.  The CRLI has energized and strengthened my resolve to work towards finding a treatment/cure for ALS.  Moreover, it has defined how to best use my time and energy towards that goal.”

The program is free for PALS and Caregivers including lodging if needed. There are places for 10 couples in the program. For information or to enroll please call 215-568-2426 or email

CRLI is underwritten in partnership with ITF Pharma, makers of Tiglutik.