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First Annual Clinical Research Learning Institute
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November 16, 2011
As the 10th Annual NEALS Meeting drew to a close, some NEALS researchers and staff were preparing for an event that had never taken place before, one that is at the forefront of what NEALS sees as vital to opening up lines of communication between patient and research communities and what NEALS hopes will be a yearly endeavor.
The first annual Clinical Research Learning Institute (CRLI), led by Dr. Richard Bedlack and Dr. Merit Cudkowicz, was a one and a half-day institute designed to teach patient-caregiver pairs and others touched by ALS to be ALS Research Ambassadors. Faculty and staff from ten ALS research institutions were on-hand to provide attendees with information to help build upon their involvement in the ALS community while making them stronger advocates. Attendees were given up-to-date, factual information to better inform their decisions in any role, whether that is lobbying in Washington, speaking at support groups, or educating other pALS about enrollment in clinical trials. “We had open discussion of therapy development in ALS, what are the hopes, the challenges, and how we can work together efficiently to develop new treatments for people with ALS today,” Dr. Cudkowicz said.
Multiple presentations by faculty and staff covered topics of trial design, ethics, informed consent, statistics, the ALS research pipeline, funding, regulatory affairs, enrollment barriers, and advocacy opportunities. Many of these topics truly resonated with the audience, as one participant stated, “This is the information that pALS crave.” Patients and caregivers were given the opportunity to ask questions and share comments in a safe, open environment. Thoughtful discussion was interwoven with personal stories and examples. Time was also dedicated to group interaction.
A segment of the CRLI was devoted to understanding of scholarly journal articles. Attendees worked on improving this skill through interactive group work. In this manner, they can make better sense of what is often considered to be dense, medical jargon. “PALS want to keep up with the latest research articles as much as we investigators do,” said Dr. Bedlack. “But they don’t always have the background and training that we have that allows a critical appraisal and interpretation. We want to teach them to find the hypothesis, dissect the methods used to investigate it, and be able to accurately assess the results and conclusions.”
Since this is the first CRLI event, it is recognized that improvements must be made. The voices of the people for whom this institute is intended for - the patients and caregivers - are most important to NEALS. NEALS staff will incorporate changes to continue to ensure that this is a positive, influential, and educational experience for all attendees. Attendees received an evaluation form at the close of the institute; their valuable feedback will be incorporated into future CRLIs. Yet the CRLI is not the only venue to share their voices. Attendees have been invited to be bloggers on the new NEALS website, where they can blog about pALS advocacy for clinical research in an ongoing forum.
NEALS wants to personally thank the advocates in attendance who shared their heartfelt stories and insightful comments. Without your participation -not just at CRLI but what you do in your communities every day- the field of ALS advocacy would not be moving forward at the rate it is.
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