AUTHOR=Boostani Reza , Olfati Nahid , Shamshiri Hosein , Salimi Zanireh , Fatehi Farzad , Hedjazi Seyed Arya , Fakharian Atefeh , Ghasemi Majid , Okhovat Ali Asghar , Basiri Keivan , Haghi Ashtiani Bahram , Ansari Behnaz , Raissi Gholam Reza , Khatoonabadi Seyed Ahmadreza , Sarraf Payam , Movahed Sara , Panahi Akram , Ziaadini Bentolhoda , Yazdchi Mohammad , Bakhtiyari Jalal , Nafissi Shahriar TITLE=Iranian clinical practice guideline for amyotrophic lateral sclerosis JOURNAL=Frontiers in Neurology VOLUME=14 YEAR=2023 URL=https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2023.1154579 DOI=10.3389/fneur.2023.1154579 ISSN=1664-2295 ABSTRACT=

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegeneration involving motor neurons. The 3–5 years that patients have to live is marked by day-to-day loss of motor and sometimes cognitive abilities. Enormous amounts of healthcare services and resources are necessary to support patients and their caregivers during this relatively short but burdensome journey. Organization and management of these resources need to best meet patients' expectations and health system efficiency mandates. This can only occur in the setting of multidisciplinary ALS clinics which are known as the gold standard of ALS care worldwide. To introduce this standard to the care of Iranian ALS patients, which is an inevitable quality milestone, a national ALS clinical practice guideline is the necessary first step. The National ALS guideline will serve as the knowledge base for the development of local clinical pathways to guide patient journeys in multidisciplinary ALS clinics. To this end, we gathered a team of national neuromuscular experts as well as experts in related specialties necessary for delivering multidisciplinary care to ALS patients to develop the Iranian ALS clinical practice guideline. Clinical questions were prepared in the Patient, Intervention, Comparison, and Outcome (PICO) format to serve as a guide for the literature search. Considering the lack of adequate national/local studies at this time, a consensus-based approach was taken to evaluate the quality of the retrieved evidence and summarize recommendations.