University of Miami ALS Center

Number of service categories this organization offers.

• ✓1 service category listed

PubMed publications + ClinicalTrials.gov active trials linked to this organization.

• —0 PubMed publications
• —0 active clinical trials

How easy it is for patients and families to reach this organization.

• ✓Has website
• ✓Has phone number
• ✓Has email
• ✓Has street address
• ✓Has map coordinates

Breadth of direct support offered to patients and families.

• —In-person support groups
• —Online support groups
• —Caregiver resources in services
• —Funds or provides home care
• —Children's resources

Percentage of profile fields with information.

• ✓Name
• ✓Type
• ✓Country
• ✓State / region
• ✓Address
• ✓Phone
• ✓Email
• ✓Website
• ✓Mission

Connections to research consortia and ALS networks.

• —Part of a consortia
• —International reach
• —Publishes research
• —Maintains an ALS database
• —Mentions a known network (NEALS, ENCALS, TRICALS, etc.)

No community reviews yet — this dimension is excluded from the overall score.

• —No reviews yet

Contact

Mission

Major US Southeast research flagship; CReATe Consortium founding institution; Pre-fALS natural history study home base; neurofilament light biomarker discovery site; ALS Toolkit in Epic EHR originator. Lead: **Dr. Michael Benatar, MD, PhD** — joined University of Miami late 2010; Arimoclomol Phase II/III trial initiator and lead; neurofilament light first-biofluid-biomarker-of-pre-symptomatic-ALS discovery (in collaboration with Dr. Andrea Malaspina at Barts and The London, University of London); ALS Toolkit in Epic EHR originator; Second Visit Clinic model innovator. Kessenich Family ALS Clinic opened 1998 — founded with gift from Skip Kessenich (ALS patient) and friends CReATe Consortium (Clinical Research in ALS and Related Disorders for Therapeutic Development) — Benatar-founded US multicenter consortium advancing therapeutic development for ALS + FTD + PLS + MSP (multisystem proteinopathy) + HSP (hereditary spastic paraplegia) + PMA (progressive muscular atrophy); studies genotype-phenotype relationships and biomarker/therapeutic development Pre-fALS Study — "first systematic study of individuals at genetic risk for ALS"; initiated 2007; transferred to University of Miami; still ongoing Arimoclomol clinical trials — Benatar initiated and led Arimoclomol Phase II trial; promising results led to Phase III launched 2018 Neurofilament light biomarker — identified as first biofluid biomarker of pre-symptomatic ALS (with Dr. Andrea Malaspina, Barts/University of London) — foundational discovery enabling modern ALS biomarker-guided trials