Publications and Reports

ALS Focus™ results are shared through a variety of conference posters and presentations, government agency reports, peer-reviewed journals and other publications. You can view or download published materials by clicking on the links below.

2023

Lee, A., Parvanta, S., Halpern Paul, I., Knoche, C., Logan, A., Wodarek O’Reilly, A., Eckstein, M., & Bayatti, A. (2023, October 4-6). Seeking insurance coverage and payment of ALS care: Results from a 2022 ALS Focus survey. 2023 Annual Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium Meeting, Clearwater, FL.

Lee, A., Parvanta, S., Halpern Paul, I., Knoche, C., Logan, A., Wodarek O’Reilly, A., Eckstein, M., & Bayatti, A. (2023, October 15-17). Health insurance denials and appeals: Experiences of people with ALS and caregivers from a U.S. survey. 2023 National Organization for Rare Disorders (NORD) Rare Diseases and Orphan Products Breakthrough Summit, Washington, DC.

2022

Parvanta, S., Banker-Horner, L., Sherman, A., Faulconer, K., D’Agostino, D., Sinani, E., & Thakur, N. (2022, October 17-18). The ALS Focus Mobility Survey: Experiences with mobility equipment access for people with ALS. 2022 National Organization for Rare Disorders (NORD) Rare Diseases and Orphan Products Breakthrough Summit, Washington, DC.

Parvanta, S., Banker-Horner, L., Sherman, A., Faulconer, K., D’Agostino, D., Sinani, E., & Thakur, N. (2022, December 6-9). Equipment for living with ALS: Results from the ALS Focus Mobility Survey. Motor Neuron Disease Association (MNDA) 33rd International Symposium on ALS/MND, virtual.

Broderick, K., Parvanta, S., Al Adhami, M., & Baver S. (2022, November 1-3). Correlation between ALSFRS-R and vital capacity in a real-world patient-led survey. 2022 Annual Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium Meeting, Clearwater, FL.

2021

Parvanta, S., Birhane, S., Sherman, A., Faulconer, K., Banker-Horner, L., Holiday, C., Sinani, E., D’Agostino, D., Yersak, J., & Thakur, N. (2021, October 6-7). ALS caregiver needs: Results from an ALS Focus survey of current and past caregivers. 2021 Annual Northeast Amyotrophic Lateral Sclerosis (NEALS) Meeting, virtual.

Parvanta, S., Birhane, S., Sherman, A., Faulconer, K., Banker-Horner, L., Holiday, C., Sinani, E., D’Agostino, D., Yersak, J., & Thakur, N. (2021, October 18-19). ALS caregiver needs: Results from an ALS Focus survey of current and past caregivers. National Organization for Rare Disorders (NORD) Rare Disease and Orphan Products Breakthrough Virtual Summit.

Parvanta, S., Birhane, S., Sherman, A., Faulconer, K., Banker-Horner, L., Holiday, C., Sinani, E., D’Agostino, D., Yersak, J., & Thakur, N. (2021, November 22-23). ALS caregiver needs: Results from an ALS Focus survey of current and past caregivers. The International Alliance of ALS/MND Associations Meeting, virtual.

Parvanta, S., Birhane, S., Sherman, A., Faulconer, K., Banker-Horner, L., Holiday, C., Sinani, E., D’Agostino, D., Yersak, J., & Thakur, N. (2021, December 1-2). ALS caregiver needs: Results from an ALS Focus survey of current and past caregivers. The International Alliance of ALS/MND Associations Allied Professionals Forum, virtual.

Parvanta, S., Birhane, S., Sherman, A., Faulconer, K., Knott, P., Holiday, C., Sinani, E., D’Agostino, D., Yersak, J., & Thakur, N. (2021, December 6-9). ALS Focus caregiver needs survey results: What matters most to ALS caregivers. Motor Neuron Disease Association (MNDA) 32nd International Symposium on ALS/MND, virtual.

Prior to 2021

Parvanta, S., Birhane, S., Sherman, A., Faulconer, K., Knott, P., Holiday, C., Sinani, E., D’Agostino, D., Yersak, J., & Thakur, N. (2020, November 30-December 3). ALS Focus: A new survey program informed by people with ALS and caregivers. The International Alliance of ALS/MND Associations Meeting, virtual.

Parvanta, S., Birhane, S., Sherman, A., Faulconer, K., Knott, P., Holiday, C., Sinani, E., D’Agostino, D., Yersak, J., & Thakur, N. (2020, December 9-11). ALS Focus–A new survey program for people with ALS and caregivers: Results from survey 1 on insurance needs and financial burdens. Motor Neuron Disease Association (MNDA) 31st International Symposium on ALS/MND, virtual.

Brizzi, K. T., Bridges, J. F. P., Yersak, J., Balas, C., Thakur, N., Galvin, M., Hardiman, O., Heatwole, C., Ravits, J., Simmons, Z., Bruijn, L., Chan, J., Bedlack, R., & Berry, J. D. (2020). Understanding the needs of people with ALS: A national survey of patients and caregivers. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 21(5-6), 355-363.

The ALS Association. (2019). The voice of the patient report for amyotrophic lateral sclerosis (ALS). Submitted to the U.S. Food and Drug Administration.

Laverdiere, A., Charpentier, B., Petrillo, J., Bowyer, K., Balas, C., Yersak, J., Martin, A. D., Zook, D., Valentine, J. E., & Bruijn, L. (2018, December 7-9). Input from people living with ALS and their caregivers into drug development. 29th International Symposium on ALS/MND, Glasgow, Scotland, United Kingdom.

See the Results

ALS Focus collects and maintains a database of evidence that provides a direct lens into what is important to people with ALS and their caregivers. This data is free and publicly available.

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