Packard Center Hosts First ALS Clinical Research Learning Institute® in Baltimore

The Robert Packard Center for ALS Research recently hosted its first ALS Clinical Research Learning Institute® (CRLI) at Johns Hopkins, welcoming 22 people with lived ALS experience to Baltimore.

Organized by the Northeast ALS Consortium (NEALS), the ALS CRLI program provides comprehensive education on ALS clinical research, covering topics such as study design, data analysis, ethical considerations, and community engagement. Participants who complete the training become ALS Research Ambassadors, gaining opportunities to influence and enhance the ALS research process.

The ALS CRLI was established in 2011 by Richard Bedlack, MD, PhD, of the Duke ALS Clinic and Merit Cudkowicz, MD, MSc, from the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital. Their vision was to empower those living with ALS and their families by providing essential knowledge about clinical research.

During the two-day Baltimore event, participants engaged with the Packard Center’s scientific team, Hopkins clinical team as well as clinicians from Temple University and Duke University to learn about:

• The ALS research pipeline
• Clinical trial challenges and opportunities
• Ethics and informed consent
• Current developments in ALS research
• The importance of pre-clinical research

Harvard statistician Dr. Lori Chibnik delivered a specialized presentation on interpreting clinical trial data. Participants also attended the Packard Center’s monthly investigator meeting, where they interacted with scientists and heard presentations from visiting researchers.

Allison Bulat, NEALS community engagement lead and former CRLI participant, shared her personal ALS journey and discussed ongoing engagement opportunities. “The ‘consequential magic’ that happens when we do local CRLI classes is that participants not only learn about clinical research, meet local healthcare professionals, and join the Research Ambassador family—they also become friends,” she explained. “These friendships enable them to collaborate on ALS projects while providing physical and emotional support throughout their ALS experience.”

The Packard Center plans to host additional CRLI sessions to expand participant engagement in the future.

For more information about the CRLI and to learn how you can apply to attend a future session, click here: https://neals.org/people-living-with-als/als-clinical-research-learning-institute

Meet Marley an ALS service dog and the newest ALS Research Ambassador!