I recently attended the Association of Clinical Research Professionals annual meeting in San Antonio, Texas. This was a typical business meeting with the usual objectives of education and networking with colleagues, etc. The conference was set up so that many sessions were presented simultaneously so attendees were forced to choose the sessions providing the most value. However, once or twice during the conference a plenary session was held where a single topic was presented to the entire conference. I want to tell you about the plenary session titled Rare: The Journey of a Clinical Trial.
It started with a screening of the documentary film Rare, which follows the journey of a mother, Donna Appell, when she discovers her daughter Ashley has a rare genetic disorder called Hermansky-Pudlak Syndrome (HPS). The disorder is so rare that when Ashley was diagnosed as a baby there were only about 30 other known cases in the United States. Ms. Appell was the driving force behind the creation of an HPS patient/family support network. She also lobbied extensively on behalf of HPS and other rare disease research, culminating in an important HPS clinical trial funded by the National Institute of Health (NIH).
One difficulty with conducting clinical trials for diseases as rare as HPS is finding enough study subjects for the trial but Ms. Appell was up to the challenge, personally recruiting study subjects from around the United States and in Puerto Rico. Ms. Appell is all the proof I need to see that one person can make a difference.
But here is the really inspiring part – after the film screening, Ms. Appell and Ashley addressed the conference and they thanked the audience of clinical research professionals for all that we do to advance trials of new and improved therapies. I don’t think I’ve ever felt more satisfied with my career choice as I did in that moment.
If you would like more information about clinical studies contact Josh at the Clinical Research Center at 541-754-1398, option 7, or send an email to research@corvallisclinic.com.You can learn more about HPS by visiting the web site www. hpsnetwork.org.
– Julie Carrico is Associate Coordinator of The Corvallis Clinic Clinical Research Center
