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HD InsightsFrom the Editor: RESILIENCE

By Daniel Claassen, MD

“Thinking of everyone today. I’m sure you are all stressed. Thank you for all you do.”

This was the text message I woke up to the morning after the announcement that Roche instructed the investigators of GENERATION-HD to stop dosing. I can summarize the mood in our group as frustrated, upset, and weary.

We called all our patients that morning, and the mood on the other side of the phone was similar. And yet, I also heard comments that reflect the incredible resilience of our patients and families. “This is a setback, but thank you for continuing to work on finding a cure.” “I was so hopeful, but I’m glad we found out now.” “What are the research options for me now?”

One of the most challenging aspects of running clinical trials, is the reality that the trials are not treatments. When our site was named as a participating site for GENERATION-HD, the phone rang off the hook. Some families promised to move to Nashville in order to be in the study, others said they would donate money in order to get accepted into the trial. We had to remind participants that this was a trial, not a treatment. You can get placebo, there is a chance that it won’t work, there is a risk that the therapy would have side effects.

These are discussions that happen with any clinical trial, and you know who was fielding these calls? The clinical research coordinator.

In this edition of HD Insights, we highlight the important role of the clinical research coordinator. It is a role that is sometimes taken for granted, but one that needs to be elevated, honored, rewarded, respected, and appreciated. Many of our academic centers don’t consider this a career path, and yet, our coordinators are the linchpin of our clinical research programs. They are asked to wear so many hats, from understanding regulatory details to managing patient expectations.

We look at how the HSG has outlined a new credentialing mechanism that is coordinator-centric, we reflect on the attributes of an excellent coordinator and what makes a strong research team. We also consider the career story of Jody Goldstein (who I like to refer to as the coordinator’s coordinator!)

Oh, and we also have so much more: new trials, scientific discoveries, new methods—all that speaks to our communal effort to serve our patients and families that suffer from HD. Learn about Seth Rotberg’s personal HD story, and how he is providing social support to hundreds of young adults with rare diseases.

Yes, we are in this together. It’s OK to be frustrated, but hope will always win.

Dr. Claassen is Associate Professor of Neurology at Vanderbilt University, and Chief Editor of HD Insights.