ALS Association Offering Doctors ‘thinkALS’ Guide to Speed Diagnosis
Early diagnosis will allow patients to join clinical trials, and to access treatments and care at disease stages where there’s a greater chance that progression can be slowed.
“Reducing time to diagnosis is a high priority for The ALS Association,” Jill Yersak, PhD, vice president of mission strategy at The ALS Association, said in a press release.
Diagnosing ALS can be a complex and long process, often achieved after eliminating alternative diagnoses and after patients undergo a variety of tests, such as electromyograms, nerve conduction studies, muscle biopsies, magnetic field imaging, and biofluid analyses.
A correct diagnosis often takes more than year, which slows access to treatments that work against disease progression, and can reduce a person’s chances of enrolling in clinical trials testing candidate therapies.
“There is incredible progress being made in clinical therapeutic development in ALS,” said Suma Babu, an assistant professor of neurology at Harvard Medical School, noting that “the longer it takes for a patient to be diagnosed, the longer they are waiting to get access to treatments or therapies that may help them live longer and retain functional independence longer.”
Babu is a member of ALS Association’s Time to Diagnosis working group, and the thinkALS development team.
“It is imperative that people are diagnosed earlier so we can help begin to reduce burdens and avoid additional unnecessary testing. We are excited to see this tool come to fruition and are grateful to the thinkALS development group and the Association’s time to diagnosis working group members who all had an important part in helping develop it,” Yersak said.
The new diagnostic guide includes a comprehensive list of key clinical signs of ALS to help guide physicians to suspect ALS earlier in a person.
ThinkALS also contains information to help locate ALS multidisciplinary clinics according to the patient’s zip code, and a guide to help doctors write referrals that might speed access to relevant treatments.
“It has never been more critical to diagnose ALS quickly and refer patients to multidisciplinary ALS centers,” Babu said.
The idea for thinkALS, and recognition of its need, came during the ALS Association roundtable “Reducing Time to Diagnosis,” which brought together ALS clinicians and scientists, patients, caregivers, association leaders, and pharma representatives.
At the meeting, participants identified current barriers to an early ALS diagnosis, and ways to shorten the time patients wait to be properly diagnosed and treated.
General neurologists are the first physician group targeted for thinkALS outreach and education, due to their pivotal role in diagnoses. The association then will incrementally expand the initiative to include other specialists, as well as primary care physicians.