Patients living with amyotrophic lateral sclerosis in Kansas, Missouri and Oklahoma can now get better access to clinical trials, thanks to the recent acceptance of KU Wichita Center for Clinical Research as a member of an ALS research consortium.

In November, the Wichita center became one of the more than 140 research centers across the U.S. and internationally that comprise the Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium.

Being part of a research consortium means getting fast-tracked access to clinical trials, which help investigate potential treatments and discover potential early markers for the disease to help improve diagnoses and treatments.

That’s why Tiffany Schwasinger-Schmidt, M.D., an associate professor of internal medicine at KU School of Medicine-Wichita who directs the Wichita research center, is excited about the membership designation.

“What it’s going to do is really allow us to break down some of the barriers for people living with ALS with regards to access to clinical trials,” she said. The NEALS Consortium “is committed to getting clinical research done and getting it to the people living with the disease.”

While ALS is a relatively rare disease — with an estimated 32,000 people in the U.S. living with it, according to the Centers for Disease Control and Prevention — it has devastating effects on those who are diagnosed with it.

The disease affects the nerve cells that control the upper and lower parts of the body, killing off the nerve cells and eventually leading to paralysis. For years, it was commonly called Lou Gehrig’s disease after the famous baseball player who retired in 1939 when he was diagnosed with the disease.

As a neurological disease researcher and medical doctor, Schwasinger-Schmidt — who has been working with ALS patients in a partnership with Neurology Consultants of Kansas and the KUMC Department of Neurology — will be the principal investigator of the ALS clinical trials conducted through the Wichita research center.

Geography is one of the biggest barriers to participating in clinical trials for ALS patients in the tri-state area. Some clinical trials require frequent monitoring, which can be a challenge for patients who must travel long distances for appointments, Schwasinger-Schmidt said.

The KU clinical research center in Kansas City is the only other NEALS Consortium member in Kansas, there are two members in St. Louis and none in Oklahoma, according to the consortium’s website.

For patients living with the effects of a motor neuron disease, travel can be even more difficult.

“To reduce that travel burden is such an incredible opportunity,” Schwasinger-Schmidt said.

She’s been reaching out to neurologists in Oklahoma City and Tulsa to let them know about the opportunities for their ALS patients to participate in the Wichita research center’s clinical trials.

The two ALS clinics that KU School of Medicine-Wichita is involved with in Kansas City and Wichita currently see more than 330 patients per year, Schwasinger-Schmidt said. The clinics combined add about 130 newly diagnosed patients each year, she said.

To participate in a clinical trial, a searchable central database of clinical trials can be found at clinicaltrials.gov.

A list of studies being conducted through the KU Wichita Center for Clinical Research and an enrollment interest form can be found on the center's website.