Episode 15: Power of ALS Registries

Today we are connecting with the key players of two national ALS Registries to discuss the power that these registries harness to better understanding this disease, trends, and potential treatments. We will be speaking with Dr. Paul Mehta, the Principal Investigator for the United States congressionally-mandated National Amyotrophic Lateral Sclerosis (ALS) Registry. A registry database which resides within the Centers for Disease Control and Prevention and is responsible for providing medical, scientific, and epidemiological expertise on matters related to ALS. We will also speak with Dr. Elisabeth Kilroy, the Director of MOVR at the Muscular Dystrophy Association. MOVR is the neuroMuscular ObserVational Research Data Hub, which captures medical and genetic data from individuals with neuromuscular diseases nationwide.

If you have been diagnosed ALS, register with the National ALS Registry here: https://www.cdc.gov/als/

Transcript

Guests:

Dr. Paul Mehta is the Principal Investigator for the United States congressionally-mandated, National Amyotrophic Lateral Sclerosis (ALS) Registry, which resides within the Centers for Disease Control and Prevention. The registry is responsible for providing medical, scientific, and epidemiological expertise on matters related to ALS. Prior to joining ATSDR, Dr. Mehta was responsible for overseeing external research initiatives for the National Center for Environmental Health (NCEH) and ATSDR. Dr. Mehta started his career at Center for Disease Control (CDC) as a Team Leader for the Division of Select Agents and Toxins (DSAT) where he was responsible for CDC's Etiological Agent Import Permit Program (EAIPP). He was also responsible for conducting audits of high containment laboratories nationally. Dr. Mehta has a Doctor of Medicine (MD) from Fatima Medical Science Foundation and Bachelor of Arts in Biology from the University of Toledo.

Dr. Elisabeth Kilroy's passion for understanding the intricacy of the neuromuscular system and human movement was ignited after watching the progression of her father and brother's muscular dystrophy. Dr. Kilroy earned her BS in Exercise Science with a minor in Neuroscience from College of Charleston in December 2014. She then completed her PhD in June 2020 in the lab of Dr. Clarissa Henry at University of Maine. Her graduate work focused on the role of inactivity versus electrical stimulation on disease progression in the zebrafish model for Duchenne muscular dystrophy. She then served as a post-doctoral scientist in the lab of Dr. Kevin Flanigan at Nationwide Children's Hospital, where she focused on understanding dystrophin expression in the brain. Now, Dr. Kilroy is the Director of MOVR at the Muscular Dystrophy Association. MOVR is the neuroMuscular ObserVational Research Data Hub, which captures medical and genetic data from individuals with neuromuscular diseases.

To learn more about MOVR, individuals can send an email to Elisabeth at ekilroy@mdausa.org or to the MDA MOVR email at mdamovr@mdausa.org. MOVR website: https://www.mda.org/science/movr-data-hub-neuromuscular-observational-research.

Connect with Elisabeth:

Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022.

Connect with Mindy:

LinkedIn: https://www.linkedin.com/in/hendersonmindy/
Instagram: https://www.instagram.com/mindyhendersonspeaks/