Last modified: Thursday, March 3, 2011
Patient pioneers sought to help doctors help others
FOR IMMEDIATE RELEASE
March 3, 2011
INDIANAPOLIS -- An organization dedicated to improving medical innovation in Indiana is reaching out to those who want to help doctors interested in developing new and better treatments for patients throughout the state.
INresearch.org, a new website from the Indiana Clinical and Translational Sciences Institute, a collaboration between Indiana University, Purdue University and the University of Notre Dame, will connect citizens to cutting-edge medical research at these institutions with a click of a button. Anyone who signs up online will be eligible to participate in research studies, also known as "clinical trials," happening throughout the state, including Indiana University Health hospitals.
"I'm grateful to everyone who's ever taken the time to volunteer in a research study," said Anantha Shekhar, M.D., Ph.D., a practicing psychiatrist and director of the Indiana CTSI. "After a career of working with patients with chronic disabling mental conditions -- where we don't fully understand the causes and for which we have few successful treatments -- I understand the urgency for more research. Participating in a research study offers hope to patients through the invaluable information it provides to doctors and scientists working to transform promising new medical discoveries into a wider reality."
Registrants at INresearch.org will be given the opportunity to create and manage an online health profile. Volunteers whose health information matches a specific study may be invited by a doctor or project coordinator to participate in a research study. Participation may include answering a survey; participating in interviews; undergoing a physical, including providing a blood or urine sample; or trying a new treatment or medication.
A serious barrier to new treatments for cancer, heart disease, depression and many other life threatening diseases is simply finding people most likely to benefit by trying out a new drug or discovery, said Shekhar. INResearch.org connects doctors to pioneering patients and volunteers whose participation in a research study may ultimately accelerate access to new and better medical treatment in Indiana and beyond.
"I've been very fortunate to participate in clinical trials," said Fred Kocher, a multiple myeloma patient from Hendricks County who's participated in two research studies since 2001. "I feel like I'm part of the advancement of medical science," he said, noting his own treatment, which has effectively prevented his conditions from worsening over the past decade, owes its success to those who've pioneered the way.
"I think that if I received my diagnosis today, I would feel much more confident about the future than I had at the time," he said. "I'm a true beneficiary of all the great work that's come before me."
The new site also represents a significant investment in information sharing between the participating Indiana CTSI institutions and speaks to the strong relationship between the IU School of Medicine and IU Health, which has recently declared increasing research study participation as a top priority for the statewide hospital system.
INResearch.org is open to everyone, including healthy volunteers as well as patients looking to be considered for studies focused on specific health conditions. Volunteers may choose what studies best fit their needs and reserve the right to withdraw at any time. Registration does not automatically enroll individuals in a research study. All studies that reach the volunteer phase have been rigorously reviewed to ensure their safety. Strict government rules guarantee no patient will ever be harmed or denied complete medical care by participating in a clinical trial. Volunteers may also explore available research studies prior to reg istering at indianactsi.org/clinicaltrial.
More about Indiana CTSI
The Indiana Clinical and Translational Sciences Institute is a statewide collaboration between Indiana University, Purdue University and the University of Notre Dame, and public and private partnerships that facilitates the translation of scientific discoveries in the lab into clinical trials and new patient treatments in Indiana and beyond. Indiana CTSI was established in 2008 with a $25 million Clinical and Translational Science Award from the National Center for Research Resources of the National Institutes of Health, supplemented by nearly $60 million from the state, the three member universities, and public and private partners. The Indiana CTSI is a member of a national network of 55 CTSA-funded organizations across the United States.