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.

Contacts By Location

Site Name	City	State/Territory	Contact	Phone Number	Primary SC Email Address	Actively Enrolling?
Barrow Neurological Institute	Phoenix	AZ	Christopher Shiver	602-406-7773	fulton.research@dignityhealth.org	Yes
CHALS-CCT, University of Puerto Rico, Medical Sciences Campus	San Juan	PR	Frances Aponte	787-767-9194	frances.aponte2@upr.edu	Yes
Dartmouth-Hitchcock Clinic	Lebanon	NH	Kathleen Sullivan	603-650-6496	neuroresearch@hitchcock.org	Yes
Duke	Durham	NC	Emma Ward	919-600-3626	emma.ward@duke.edu	Yes
Hospital for Special Care	New Britain	CT	Sabine Lebel-Hardenack	(860)827-1958 ext# 5992	SHardenack@HFSC.org	Yes
Johns Hopkins	Baltimore	MD	Delayna Willie	410-502-6597	dwillie2@jh.edu	Yes
Mayo Clinic	Jacksonville	FL	Jany Dagher, Jeffery Gainer	(904) 953 3730	dagher.jany@mayo.edu gainer.jeffery@mayo.edu	Yes
Northwestern University	Chicago	IL	Anirudh Muralidharan Aeryn Hopwood	Anirudh: (312) 503-6823; Aeryn: (312) 503-5166	anirudh.muralidharan@northwestern.edu	Yes
Penn State Health	Hershey	PA	Michele Hare	717-531-8257	nervemuscle@pennstatehealth.psu.edu	Yes
Providence ALS center	Portland	OR	Providence Neurological Specialties-East	(971) 231-8245		Yes
Saint Alphonsus Regional Medical Center	Boise	ID	Helena Snider, Westin Payne	208-367-7397	neuro.research@saintalphonsus.org	Yes
Texas Neurology	Dallas	TX	Haley Rucker	214-827-3610	hrucker@texasneurology.com	Yes
UC San Diego Health	La Jolla	CA	Gil Gutierrez	858-246-2325	grg005@health.ucsd.edu	Yes
University of Alabama at Birmingham	Birmingham	AL	Melanie Benge	205-975-0445	melaniebenge@uabmc.edu	Yes
University of California, San Francisco	San Francisco	CA	Hannah George	415-353-2959	hannah.george@ucsf.edu	Yes
University of Colorado Anschutz Medical Campus	Aurora	CO	Alexis Shepardson	303-724-4644	neuroresearch@cuanschutz.edu	Yes
University of Michigan	Ann Arbor	MI	Caroline Piecuch	734-936-8781	carolinp@med.umich.edu	Yes
University of Nebraska Medical Center	Omaha	NE	Nathan McKain	402 552-6241	nmckain@unmc.edu	Yes
University of Washington	Seattle	WA	Kinsey Chapman	206-543-0081	kinseyc@uw.edu	Yes
Virginia Commonwealth University	Richmond	VA	Brianna Schibley-Laird	315-651-9378	brianna.schibleylaird@vcuhealth.org	Yes
Washington University	St. Louis	MO	Jesse Markway	1-844-257-2273	als@wustl.edu	Yes
Mass General	Boston	MA	Courtney Uek	617-724-0783	cuek@mgb.org	Yes
Columbia University	New York	NY	Ben Hoover	212-305-6788	alsresearch@cumc.columbia.edu	Yes
Ohio State University	Columbus	OH	Carly Failor	614-293-4973	alsresearch@osumc.edu	Yes
UC Irvine	Irvine	CA	Rosa Gonzalez	714-456-6191	rosaig1@hs.uci.edu	Yes
University of Utah	Salt Lake City	UT	Scott Redlin	801-581-7437	scott.redlin@utah.edu	Yes
University of Minnesota	Minneapolis	MN	Julia Munoz	612-624-9989	munoz156@umn.edu	Yes
Houston Methodist	Houston	TX
Indiana University	Indianapolis	IN	Angela Micheels	317-963-7385	amicheel@iu.edu	Yes
Temple University	Philidelphia	PA	John Furey	267-694-0573	john.furey0001@temple.edu/	Yes
Georgetown University	Washington	DC	Arthur Zimmer	301-956-6489	az642@georgetown.edu	Yes
NIH/NINDS Clinical Research	Bethesda	MD	Katelyn Porter	301-451-1229	katelyn.porter@nih.gov	Yes
Henry Ford Health	Detroit	MI	Maria Stotland	313-916-3359	mstotla1@hfhs.org	Yes
Nova Southeastern University	Fort Lauderdale	FL