FAIRWAY, Kan. — Advances in medicine are being delayed by too few people volunteering for research. Many don’t know about studies they could be in and others don’t trust those doing research, but perceptions could be changing.
Once a week, Randy Larson of Independence comes to the KU Clinical Research Center in Fairway. He wants to help himself and others who have ALS (Amyotrophic lateral sclerosis, commonly referred to as Lou Gehrig’s disease) — a disease that steals movement and kills.
“It’s the hand that’s dealt to you so gotta live with it and do your best,” Larson said.
For Larson, that means taking part in a study of a pill.
“Benefit somebody, you know?” Larson said.
Go to the government’s clinical trials’ website — and you see a need for many more people like Randy. Thousands of studies are recruiting patients.
Three years into one study of Alzheimer’s Disease and exercise, KU’s Dr. Jeffrey Burns is still looking for 20 volunteers.
Dr. Burns said strict criteria for some studies make it difficult. So can a lack of awareness or little money for advertising. But some people don’t want to take part because they think risks far outweigh benefits.
“Some studies are high risk. Most are not and we spend great amount of time and attention to details to minimize risk,” Dr. Burns said.
Still others don’t trust the motives of researchers.
But a new study finds public perception of clinical trials is improving compared to eight years ago. Now, less than a quarter of people believe study participants are gambling with their health.
And less than a third think study sponsors won’t inform the public quickly about safety concerns. Dr. Burns said those are good signs.
“Essentially every medical advance is dependent on participation,” Dr. Burns said.
Because Larson stepped up, there could be more to fight a devastating disease. The study of public perceptions was done by “The Center for Information and Study of Clinical Research Participation.”
For more on K.U. clinical trials, call 913-588-6290. For cancer clinical trials, call 913-945-7552.
