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.

Middle aged African American woman in peach colored shirt
Middle aged man with ALS in a blue shirt and a young female nurse

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
Middle aged couple sitting on a bench looking at a tablet

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!    

Barrow Neurological Institute

Washington University:  

Mass General:

Texas Neurology:

Ohio State University

University of Washington:

John Hopkins:

VCU (Virginia Commonwealth):

Hospital for Special Care:

Penn State Health:

University of Puerto Rico:

Dartmouth-Hitchcock Clinic:

Duke:

University of Alabama at Birmingham:

University of Michigan:

University of Nebraska Medical Center:

University of Colorado Anschutz Medical Campus:

Columbia University:

Saint Alphonsus Regional Medical Center:

Georgetown University:

UC Irvine:

University of California, San Francisco:

University of Utah:

Henry Ford Health:

Indiana University :

Temple University:

Mayo Clinic:

Providence ALS center:

UC San Diego Health:

NIH/NINDS Clinical Research:

Northwestern University:

University of Minnesota:

University of Pennsylvania:

Nova Southeastern University:

Contacts By Location

Site NameCityState/TerritoryContactPhone NumberPrimary SC Email AddressActively Enrolling?
Barrow Neurological InstitutePhoenixAZChristopher Shiver602-406-7773fulton.research@dignityhealth.orgYes
CHALS-CCT, University of Puerto Rico, Medical Sciences CampusSan JuanPRFrances Aponte787-767-9194frances.aponte2@upr.eduYes
Dartmouth-Hitchcock ClinicLebanonNHKathleen Sullivan603-650-6496neuroresearch@hitchcock.orgYes
DukeDurhamNCEmma Ward919-600-3626emma.ward@duke.eduYes
Hospital for Special CareNew BritainCTSabine Lebel-Hardenack(860)827-1958 ext# 5992SHardenack@HFSC.orgYes
Johns HopkinsBaltimoreMDDelayna Willie410-502-6597dwillie2@jh.eduYes
Mayo ClinicJacksonvilleFLJany Dagher, Jeffery Gainer(904) 953 3730dagher.jany@mayo.edu
gainer.jeffery@mayo.edu		Yes
Northwestern UniversityChicagoILAnirudh Muralidharan
Aeryn Hopwood		Anirudh: (312) 503-6823;
Aeryn: (312) 503-5166		anirudh.muralidharan@northwestern.eduYes
Penn State HealthHersheyPAMichele Hare717-531-8257nervemuscle@pennstatehealth.psu.eduYes
Providence ALS centerPortlandORProvidence Neurological Specialties-East(971) 231-8245Yes
Saint Alphonsus Regional Medical CenterBoiseIDHelena Snider, Westin Payne208-367-7397neuro.research@saintalphonsus.orgYes
Texas NeurologyDallasTXHaley Rucker214-827-3610hrucker@texasneurology.comYes
UC San Diego HealthLa JollaCAGil Gutierrez858-246-2325grg005@health.ucsd.eduYes
University of Alabama at BirminghamBirminghamALMelanie Benge205-975-0445melaniebenge@uabmc.eduYes
University of California, San FranciscoSan FranciscoCAHannah George415-353-2959hannah.george@ucsf.eduYes
University of Colorado Anschutz Medical CampusAuroraCOAlexis Shepardson303-724-4644neuroresearch@cuanschutz.eduYes
University of MichiganAnn ArborMICaroline Piecuch734-936-8781carolinp@med.umich.eduYes
University of Nebraska Medical CenterOmahaNENathan McKain402 552-6241nmckain@unmc.eduYes
University of WashingtonSeattleWAKinsey Chapman206-543-0081 kinseyc@uw.eduYes
Virginia Commonwealth UniversityRichmondVABrianna Schibley-Laird315-651-9378brianna.schibleylaird@vcuhealth.orgYes
Washington UniversitySt. LouisMOJesse Markway1-844-257-2273als@wustl.eduYes
Mass General BostonMACourtney Uek617-724-0783cuek@mgb.orgYes
Columbia UniversityNew YorkNYBen Hoover212-305-6788alsresearch@cumc.columbia.eduYes
Ohio State UniversityColumbusOHCarly Failor614-293-4973alsresearch@osumc.eduYes
UC IrvineIrvineCARosa Gonzalez714-456-6191rosaig1@hs.uci.eduYes
University of UtahSalt Lake CityUTScott Redlin801-581-7437scott.redlin@utah.eduYes
University of MinnesotaMinneapolisMNJulia Munoz612-624-9989munoz156@umn.eduYes
Indiana University IndianapolisINAngela Micheels317-963-7385amicheel@iu.eduYes
Temple UniversityPhilidelphiaPAJohn Furey267-694-0573john.furey0001@temple.edu/Yes
Georgetown UniversityWashingtonDCArthur Zimmer301-956-6489az642@georgetown.eduYes
NIH/NINDS Clinical ResearchBethesdaMDKatelyn Porter301-451-1229katelyn.porter@nih.govYes
Henry Ford HealthDetroitMIMaria Stotland313-916-3359mstotla1@hfhs.orgYes
Nova Southeastern UniversityFort LauderdaleFL

ALL ALS Consortium

If you wish for a member of study team to contact you about the ALL ALS consortium, please fill out our Participant Interest Intake Form.

Get More Information

Funding:

The ALL ALS Consortium and all related studies are funded by the National Institutes of Health (NIH), Grant # 1OT2NS136938 and 1OT2NS136939.

Participant Interest Form