thinkALS is an easy-to-use and powerful diagnostic tool that can help reduce the time it takes to diagnose ALS and refer people to multidisciplinary ALS centers. This is a critical part of making ALS a livable disease, because it leads to earlier access to the highest quality therapies, supportive treatments, and multidisciplinary care, along with more opportunities for people living with ALS to participate in clinical trials.
thinkALS provides primary care doctors and neurologists a comprehensive list of key clinical features of the disease that may lead them to suspect an ALS diagnosis much earlier in the process. It also provides information to find the nearest ALS multidisciplinary clinics based on zip code, along with guidance on how physicians can write referrals to speed up access to ALS treatments.
Our goal is for consultations at ALS clinics to happen within two weeks of referral. To expedite the referral process, the correct referral language is needed, which is provided in the tool.
*This tool is aimed primarily at non-ALS specialists. This tool cannot be substituted as a diagnostic instrument but used only as a diagnostic guide.
Find a Multidisciplinary ALS Center Near You
Most ALS Centers in the United States can accommodate URGENT ALS referrals within two weeks! Please state clearly in your referral “CLINICAL SUSPICION FOR ALS”.
Identifying the Need to thinkALS
The need for thinkALS was identified by an ALS Association Roundtable “Reducing Time to Diagnosis.” A working group comprised of ALS clinicians and physician scientists, people with ALS, caregivers, pharma industry representatives, and Association leaders identified barriers to early ALS diagnosis and strategies for reducing the time to ALS diagnosis.
The group’s initial focus was on doctors who most frequently refer patients to ALS clinics for consultation, which are usually general neurologists. The Association’s goal was to improve awareness and resources available to general neurology clinicians, along with advanced practice providers in general neurology clinics.
This tool was reviewed in depth by members of the ALS clinician community, along with people living with ALS and caregivers. We hope that the awareness and access to this ALS diagnostic resource may be subsequently expanded to other clinician groups that are likely to provide care for an ALS patient, prior to the formal diagnosis such as primary care physicians, other medical and surgical specialists, and allied health professionals.
Benefits of Timely Diagnosis
Through The ALS Association’s Time to Diagnosis working group, a multi-stakeholder consensus statement on the importance of timely diagnosis was developed. This statement provides a brief review of the problem of delayed diagnosis and the benefits for patients and their families of reducing the time it takes to confirm ALS.
Delayed diagnosis of ALS can mean irreversible functional loss, access to disability benefits, and missed opportunity for interventions that can improve outcomes. Additionally, along the diagnosis journey, patients often undergo redundant, unnecessary, and sometimes painful diagnostic tests. Timely diagnosis allows patients and families time to prepare to fight the disease in any way possible and to prepare for the extraordinary familial, financial, and emotional trauma that ALS inflicts. It is important not to allow fatalism to derail the chance for the earliest possible diagnosis, even while recognizing how difficult it can be to give and receive an ALS diagnosis.