Researching for Hope

Passionately working toward a cure

Our research program focuses on advancing ALS therapy development by identifying and filling knowledge gaps that have, in the past, hampered the development of effective treatments. This approach has required us to work at the forefront and the intersection of “deep” phenotyping (i.e. detailed characterization of clinical features), natural history studies, pre-symptomatic disease, biomarker development, genetics, neuroimaging, environmental exposures, novel data collection methods, and clinical trials. Success in addressing a subject as complex as ALS therapy development requires a breadth of expertise, necessitating a highly inter-disciplinary, broadly collaborative, and seamlessly translational approach to research. We therefore work extensively with researchers across the U.S. and internationally. The name of our group – the ALS Research Collaboration – aims to capture this ethos.

Our approach to research

Sound Science

  • Strong rationale and study design
  • Rigorous data and biospecimen collection
  • Thoughtful analysis and results interpretation

Collaborative Research

  • Inter-disciplinary team science
  • Working with established ALS investigators, and attracting investigators from other fields who have relevant expertise
  • Seamlessly translational
  • Sharing of data, resources, and expertise

Commitment to Patients & Families

  • Participant-friendly approach to research
  • Opportunities for all to participate in research
  • Responsible custodians of data and biological samples

Meet our team

We are a clinical/translational research group led by Dr. Michael Benatar and Joanne Wuu at the University of Miami. Members of the group include neurologists, biostatistician, neuroscientists, genetic counselor, neuropsychologist, project and data managers, research coordinators, and students.

Making ALS History

Founded in 2006 and led by Dr. Michael Benatar and Joanne Wuu, the ALS Research Collaboration at the University of Miami has been the vanguard of ALS therapy development through a series of landmark studies focused on pre-symptomatic ALS, the discovery and validation of biomarkers that are fit-for-purpose, pioneering use of remote technology to facilitate ALS research, and ALS prevention.

Clickable Event
Clickable Highlight

AUG 2006

Launched National ALS Registry Georgia Pilot Project

APR 2007

“Lost in Translation”

AUG 2007

Launched Pre-fALS study

AUG 2007

Launched CRiALS Biomarker study

JUN 2008

Launched Arimoclomol SOD1 Phase II trial

DEC 2009

“Tackling the Challenges of ALS from a Familial Perspective”

SEP 2010

“Preparing for a U.S. National ALS Registry”

DEC 2010

“Telemedicine to Facilitate ALS Research”

APR 2011

Published methods for pre-symptomatic ALS genetic counseling

SEP 2011

Published first MRI biomarker of pre-symptomatic ALS

DEC 2011

“MRI Evidence of Disease in Pre-Symptomatic SOD1+”

JAN 2011

Launched IBMPFD-ALS study

OCT 2012

“Pre-symptomatic Studies in ALS: Rationale, Challenges, and Approach”

DEC 2012

Defined phenotypic overlap between ALS and multisystem proteinopathy

MAY 2013

Published results from the IBMPFD-ALS study

MAR 2014

Identified p75 as the first biochemical marker of ALS progression

SEP 2014

Established the CReATe Consortium

DEC 2014

“The Challenge of Early Therapeutic Intervention in ALS”

DEC 2014

Launched CRiALS PRESS-ALS study

APR 2015

Launched CReATe PGB multi-center study

DEC 2015

“ALS Biomarkers for Therapy Development”

DEC 2015

Presented guidelines for pre-symptomatic ALS genetic counseling

JUN 2016

Published guidelines for pre-symptomatic ALS genetic counseling

DEC 2016

Presented results of Arimoclomol SOD1 phase II trial

DEC 2016

Q-motor as pre-symptomatic ALS biomarker

MAY 2017

Criteria for ALS-FTSD

DEC 2017

Presented NfL as pre-symptomatic ALS biomarker

FEB 2018

Empowering the use of EHR for research

FEB 2018

Launched CReATe CAPTURE-ALS multi-center study

FEB 2018

Arimoclomol advanced from phase II to phase III

JUL 2018

Published NfL as pre-symptomatic ALS biomarker

DEC 2018

“When Does ALS Begin?”

JAN 2019

Launched CReATe TRIAL READY multi-center study

JUL 2019

Clinical validation of neurofilaments for ALS therapy development

AUG 2019

“Defining Pre-Symptomatic Amyotrophic Lateral Sclerosis”

NOV 2019

Neurofilament & genotype in pre-symptomatic ALS

JAN 2020

First International Pre-Symptomatic ALS Workshop

JAN 2021

Launched CReATe PGB2 multi-center study

APR 2021

Presented ATLAS study design

MAY 2021

Arimoclomol phase III results

JUN 2021

Enrolled the first participant in ATLAS study

OCT 2021

“Preventing ALS: Insights from Pre-symptomatic ALS & Other Neurodegenerative Diseases”