Caroline Kyriakou, a dental office receptionist, was diagnosed with multiple sclerosis in 2006 at the age of 26. Since then, she’s been seeing doctors, taking monthly drug infusions, and using social networking to comfort and counsel others newly diagnosed with the neurodegenerative disease.
“I want them to know their life is not over,” she said.
Now the 34-year-old Brighton woman, who works full time, travels, and attends concerts with friends, is fighting the disease in a new way: helping to create an advocacy group that will use patients’ own medical data and other information on living with MS to influence the industry’s research into treatments.
The goal of iConquerMS, a website launched Tuesday by the Waltham nonprofit Accelerated Cure Project, is to drive what advocates call patient-powered research, bringing the hopes and concerns of people living with MS into a realm that has long been the exclusive province of scientists and regulators.
“Everyone’s real hope is there will be a cure found,” Kyriakou said. “But this . . . can help in all kinds of research, whether it’s more oral therapies or slowing the progression of the disease.”
The initiative, funded by the federal government, aims to enroll 20,000 patients, or about 5 percent of the estimated US patient population, by September.
Created by the Affordable Care Act of 2010, an organization called the Patient-Centered Outcomes Research Institute last year issued $100 million in grants to health care providers and patient networks to get patients more involved in medical research and to promote studies that compare the effectiveness of various drugs for individual patients. The Accelerated Cure Project got a $990,000 grant.
“Patient experience has been a relatively minor component of research in health care across all diseases,” said Robert McBurney, chief executive of the Accelerated Cure Project and a longtime industry executive. “The pharmaceutical industry, often driven by regulatory requirements, tends to focus on clinical end points such as disability scales. Extensive patient-reported outcomes have never been part of clinical trials.”
The grants are part of a broader shift in medicine to customize the diagnosis and treatment of each patient on diseases from cancers to cystic fibrosis to multiple sclerosis. Having large databases of patients’ records and therapies is critical to that effort.
“Right now it’s a crap shoot,” said Laura Kolaczkowski, the lead patient advocate for iConquerMS. “There are 11 therapies approved by the [Food and Drug Administration] for MS and a whole bunch more in the pipeline. Patients want to know what’s going to work for them.”
Kolaczkowski, 60, an administrative assistant at the University of Dayton in Ohio, said the iConquerMS initiative “really turned out the advocate part in me,” providing patients with the opportunity to shape how MS research is conducted.
“This is the first time we have something designed by people who live with MS, run by people who live with MS,” she said. “We are making the decisions on what questions we want to ask. Not only are we sharing our health care data and our daily activities, but we’re asking how a full moon or cold weather affect our disease.”
Massachusetts drug makers such as Biogen Idec Inc., the Genzyme division of Sanofi SA in Cambridge, and EMD Serono in Rockland are major players in MS treatments, and they are eager to tap into the iConquerMS trove of data and ideas.
Biogen Idec spokesman Jason Glashow said the initiative could give MS patients “a greater voice in determining areas where new research is needed and how this research should be approached, while providing important real-world data that can help to inform those working on potential treatments.”
The patient-centered research initiative, if successful in advancing MS treatments, could be applied to other diseases and conditions, patient advocates said.
“We’re at that juncture where we’re seeing a change in the role of patients,” Kolaczkowski said.
“The drug companies are interested in us, but we’re talking two different languages. I’m not a science person. Don’t quiz me about a T cell or a B cell. But I can talk to you all day about quality of life and interactions with doctors. We’re helping build a model that is going to translate to other chronic diseases, from Parkinson’s to leukemia.”
Correction: An earlier version of this story had the incorrect grant amount received by Accelerated Cure Project. It was $990,000.