ALL ALS PREVENT STUDY

Transforming the Landscape of ALS Research

Join Our Study

Seeking First Degree Relatives of Patients with ALS or FTD Without Current Symptoms of ALS

Why is the PREVENT Study Necessary?

Research into the natural history of ALS, including its earliest manifestations in asymptomatic ALS gene carriers, is a top priority. These research efforts are expected to result in knowledge that can lead to more informative, targeted, and personalized drug development, taking the field one step closer toward the goal of halting, repairing, and/or preventing ALS.

Who Can Participate in the PREVENT Study?

Age 18 years of age or older
Capable of providing informed consent
Willing to follow study procedures
First-degree relative of a known carrier of any ALS causative gene (including either symptomatic ALS/Frontotemporal dementia (FTD) patients or asymptomatic ALS gene carriers)
First-degree relative of an individual with a compelling history of ALS and/or FTD causative gene with a compelling family history of genetic ALS involving at least 2 close relatives with ALS or FTD, at least one of whom had ALS.
Access to a smartphone or tablet, and internet (need not be in the home – access to a public library or other available computer with internet connection is sufficient)

Who CAN NOT Participate in the PREVENT Study?

Noncompliance with protocol requirements
Evidence of neurological signs or symptoms concerning for ALS of FTD, at the discretion of the site investigator
Significant cognitive impairment, clinical dementia, or unstable psychiatric illness.
Clinically significant, unstable medical conditions that may prevent 12 month follow-up

What Should I Expect When Participating In This Study?

Participants will be presented an “Informed Consent Form” outlining the details of the study and will be given the opportunity to ask all questions before agreeing to participate.
Participation is completely voluntary. While participants are encouraged to remain in the study for as long as possible, discontinuation of the study is acceptable at any time, for any reason.
Participants will complete study visits to gather clinical data based on designated cohort study schedule:
- Cohort 1: In-person or remote study visits every 4 months for up to 2 years.
- Cohort 2: In-person study visits once a year for up to 2 years.
Biofluid samples (blood and optional Cerebrospinal fluid (CSF)) will be collected at study in-person visits and blood samples will be collected via home visits for remote participants.
Participants will complete short self-report questionnaires and speech tasks via an online portal.

How Will My Data and/or Samples Be Used?

Biofluids will be stored in a central biorepository and shared with researchers upon request.
Clinical data will be stored in NeuroBank, the study electronic data capture system, and the AMP ALS portal, and will be shared with requesting researchers.

Where Can I Participate?

Study visits will be conducted during routine clinical visits or as stand-alone research visits, with either a combination of in-person and remote visits or entirely remote visits. Please see the map and site list below to find the study site closest to you!

Contacts By Location

Site Name	City	State/Territory	Site Investigator(s)	Phone Number	Contact(s)	Actively Enrolling?
Barrow Neurological Institute	Phoenix	AZ	Shafeeq Ladha, MD Kerry Knievel, DO	602-406-7773	Christopher Shiver: fulton.research@commonspirit.org	YES
CHALS-CCT, University of Puerto Rico, Medical Sciences Campus	San Juan	PR	Valerie Wojna Muñiz, MD, FAAN Brenda Deliz Roldan, MD	787-767-9194, 787-209-4315	Frances Aponte: frances.aponte2@upr.edu	YES
Columbia University	New York	NY	Neil Shneider, MD, PhD	212-305-6788	Ben Hoover: alsresearch@cumc.columbia.edu	YES
Dartmouth-Hitchcock Clinic	Lebanon	NH	Mark Garret, MD	603-650-6496	Gina Kersey: neuroresearch@hitchcock.org	YES
Duke University	Durham	NC	Xiaoyan Li, MD, PhD		alsresearch@dm.duke.edu	YES
Georgetown University	Washington	DC	Shakti Nayar, MD	202-784-0672	Cassandra Holmes: cassie.holmes@georgetown.edu	YES
Henry Ford Health	Detroit	MI	Ximena Arcila-Londono, MD	313-916-3359	Maria Stotland: mstotla1@hfhs.org	YES
Hospital for Special Care	New Britain	CT	Kevin Felice, DO	860-827-1958 Ext# 5992	Sabine Lebel-Hardenack: shardenack@hfsc.org	YES
Indiana University	Indianapolis	IN	Cynthia Bodkin, MD	ASSESS: 317-963-7382; PREVENT: 317-963-7455	ASSESS: Lisa Grinstead: lgrinste@iu.edu PREVENT: Patti Hogan: hoganpr@iu.edu	YES
John Hopkins	Baltimore	MD	Nicholas Maragakis, MD	410-502-6597	Delayna Willie: dwillie2@jh.edu	YES
Mass General Hospital	Boston	MA	James Berry, MD	ASSESS: 617-643-9550; PREVENT: 617-724-9196	ASSESS: Miranda Duncan: mghassessals@mgb.org PREVENT: Anika Allen: mghpreventallals@mgb.org	YES
Mayo Clinic	Jacksonville	FL	Bjorn Oskarsson, MD	904-953 3730	Jany Dagher: dagher.jany@mayo.edu, Muriel Rabalais: rabalais.muriel@mayo.edu	YES
NIH/NINDS	Bethesda	MD	Justin Kwan, MD	301-451-1229	Katelyn Porter: katelyn.porter@nih.gov	YES
Northwestern University	Chicago	IL	Senda Ajroud-Driss, MD	312-503-5166	Aeryn Hopwood: aeryn.hopwood@northwestern.edu	YES
Nova Southeastern University	Fort Lauderdale	FL	Eduardo Locatelli, MD	954-262-6387	Donovan Mott: donovan.mott@nova.edu	YES
Ohio State University	Columbus	OH	Stephen Kolb, MD, PhD	614-685-5815	alsresearch@osumc.edu	YES
Penn State Health	Hershey	PA	Zachary Simmons, MD	717-531-8257	Michele Hare: nervemuscle@pennstatehealth.psu.edu	YES
Providence Neurological Specialties- East	Portland	OR	Nicholas Olney, MD	503-215-8580		YES
Saint Alphonsus Regional Medical Center	Boise	ID	Jackie Whitesell, MD	208-367-7397	Helena Snider, Westin Payne: neuro.research@saintalphonsus.org	YES
Temple University	Philadelphia	PA	Terry Heiman-Patterson, MD	267-694-0573	John Furey: john.furey0001@temple.edu	YES
Texas Neurology	Dallas	TX	Daragh Heitzman, MD, FAAN	214-827-3610	Haley Rucker: hrucker@texasneurology.com; Reham Azab: razab@texasneurology.com	YES
University of Alabama	Birmingham	AL	Nan Jiang, MD	205-975-0445	Melanie Benge: melaniebenge@uabmc.edu	YES
University of California, Irvine	Irvine	CA	Namita Goyal, MD	714-456-3947	Rosa Gonzalez: rosaig1@hs.uci.edu	YES
University of California, Los Angeles	Los Angeles	CA	Martina Wiedau, MD	310-825-6930	Elizabeth Cruz: elizabethcruz@mednet.ucla.edu	YES*
University of California, San Diego Health	La Jolla	CA	John Ravits, MD	858-246-2325	Gil Gutierrez: grg005@health.ucsd.edu	YES
University of California, San Francisco	San Francisco	CA	Laura Rosow, MD	415-353-2959	Hannah George: hannah.george@ucsf.edu	YES
University of Colorado Anschutz Medical Campus	Aurora	CO	Laura Foster, MD	303-724-4644	Alexis Shepardson: neuroresearch@cuanschutz.edu	YES
University of Michigan	Ann Arbor	MI	Eva Feldman, MD , PhD	734-936-8781	Caroline Piecuch: carolinp@med.umich.edu	YES
University of Minnesota	Minneapolis	MN	David Walk, MD	612-624-2483, 612-626-3160	Claire Mavis: mavis009@umn.edu, Mia Freiberg: freib052@umn.edu	YES
University of Nebraska Medical Center	Omaha	NE	Joseph Americo Fernandes, MD, FAAN	402-552-6241	Nathan McKain: nmckain@unmc.edu	YES
University of Pennsylvania	Philadelphia	PA	Colin Quinn, MD	215-615-0550	Matthew Burst: matthew.burst@pennmedicine.upenn.edu	YES*
University of Utah	Salt Lake City	UT	Mark Bromberg, MD, PhD	801-581-7437	Scott Redlin: scott.redlin@utah.edu	YES
University of Washington	Seattle	WA	Michael Weiss, MD	206-543-0454	Lila Brisk: lbrisk@uw.edu	YES
Vanderbilt University Medical Center	Nashville	TN	Amanda Peltier, MD	615-875-9137	Nicola Rutherford: nicola.j.rutherford.1@vumc.org	YES*
Virginia Commonwealth University	Richmond	VA	Qihua Fan, MD	804-655-0691	Demetrius Carter: demetrius.r.carter@vcuhealth.org	YES
Washington University	St. Louis	MO	Timothy Miller, MD, PhD	844-257-2273	Jesse Markway: als@wustl.edu	YES