People with multiple sclerosis (MS) rarely get the opportunity to talk to the people who design their medications. But a new collaboration is providing that opportunity to a few of us.
The Accelerated Cure Project for Multiple Sclerosis (ACP) and pharmaceutical manufacturer EMD Serono have begun working together to include patient perspectives as the pharma company develops and evaluates new MS medications.
For the past few years, ACP has produced an online research survey known as iConquerMS. Patients share information about their MS symptoms and experiences with researchers. They also suggest questions for researchers to investigate. From the group of more than 4,600 people with MS who’ve participated in the iConquerMS surveys, eight have been selected to serve on what they’re calling a Patient-Focused Drug Development (PFDD) initiative. (More patients may be added to this small group later.)
The PFDD recently had its first meeting with the EMD people and provided input on a clinical trial that’s in the late stages of being drafted. Accelerated Cure Project COO Sara Loud tells me that specific input was being sought “regarding what’s of interest to people living with MS.” Loud says the patient group will continue to work with EMD for about a year, until the clinical trial begins.
“Those of us living with multiple sclerosis have the most valuable understanding of what matters most when it comes to treatment of this condition,” says iConquerMS’ co-principal investigator and lead patient representative Laura Kolaczkowski, who also is a fellow columnist here at Multiple Sclerosis News Today. “The collaboration between the iConquerMS initiative and EMD Serono is an important opportunity for our collective voices and insights to be heard and to drive real progress in research, drug development, and ultimately in the fight against MS.”
It’s a slow process
Where are things headed?
Sara Loud wrote to me that, “It’s clear that there is a great need and interest with EMD Serono in particular and industry at large to include the perspectives of people living with MS in their work.”
She’s right about her first observation. There is a great need. But I’d like to see pharma companies show a lot more interest.
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