Tisch MS Research Center uses crowdfunding to finance clinical trial
Culminating 10 years of stem cell research for the treatment of progressive multiple sclerosis (MS), the Tisch MS Research Center in New York has raised more than $244,000 through donation-based crowdfunding in less than three weeks for a 20-patient phase I clinical trial that researchers say has the potential to repair the damage caused by the chronic disease that attacks the central nervous system.
Unlike sites conducting traditional clinical trials, funded through federal or state government or industry sponsors, the Tisch MS group, formerly the Multiple Sclerosis Research Center of New York, is an independent research center funded through charitable donations.
With an initial goal of raising $300,000 by April 14, more than 700 people have donated—a record number for a healthcare venture according to Indiegogo, the crowdfunding company running the campaign. It will collect a 4% fee on the money raised if the group meets its goal.
“One of the members of our fundraising committee knew Indiegogo and put us in touch with the site, which is a different approach to traditional ways. It’s hard to keep asking people to give and give,” said Pamela Levin, RN, spokesperson for the Tisch MS Research Center. She said the clinical trial is budgeted at $600,000. “We chose a modest goal of $300,000 because we didn’t want to be too aggressive. Some of the donations are as low as $5, and we have had some $5,000 and $10,000 donations, too. They are all tax deductible. I think we are one of the first to do crowdsourced funding for a clinical trial.”
The planned phase I trial, which received FDA approval last summer, involves the patient’s own adult stem cells harvested from their bone marrow, from which neural progenitor cells are derived. Those cells are isolated, expanded and tested prior to injection into the patient’s spinal fluid. This process is repeated three times, once every three months.
“To my knowledge, this is the first FDA-approved stem cell trial in the U.S. to investigate direct injection of stem cells into the cerebrospinal fluid of MS patients and represents an exciting advance in MS research and treatment,” said Saud Sadiq, M.D., senior research scientist at Tisch MS Research Center.
Similar trials with larger number of patients have been underway in the U.K. since 2011, with the same goal of determining whether stem cells can slow, stop or reverse brain and spinal cord damage to MS patients.
The autoimmune disease, which affects twice as many women than men, attacks the myelin sheath (the protective coating of axons) in the brain and spinal cord, interfering with the way nerve signals travel in the spinal cord and brain, which can cause difficulties walking, vision loss, numbness, pain and paralysis.
An estimated 400,000 people in the U.S. suffer from MS, many diagnosed between ages 20 and 40, with advanced or progressive patients having the most debilitating form of the disease.