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ALL ALS ASSESS STUDY

Transforming the Landscape of ALS Research

Join Our Study

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What is ALL ALS?

Funded by the NIH/NINDS, the Access for ALL in ALS Consortium (ALL ALS), is a community of two coordination centers and 34 research sites across the United States, conducting a combined longitudinal natural history study and biomarker collection study for ALS. This study will include both people currently living with ALS, and asymptomatic ALS gene carriers.

Why is the ASSESS Study Necessary?

Our aim is to make research accessible to all, not just those who can visit academic medical centers. Not only will we remove barriers through new technology allowing for remote participation, this study will set the new standard for how we learn about ALS, and we cannot do that without understanding your unique experience of ALS.

By studying data from a wide spectrum of people, we can learn more about ALS and make future clinical trials better and more accessible.

Doctor and medical professionals reviewing data over a tablet
A young man with ALS wearing a green shirt and sitting in a wheelchair laughing with another man in a beige sweatshirt and white hat

Who Can Participate in the ASSESS Study?

The study includes 1600 ALS patients (Cohort 1) and 450 control participants (Cohort 2).

  • Cohort 1 -People Currently living with ALS
  • Cohort 2 – Individuals without ALS or known ALS gene
    mutations. (includes spouses, family members who
    tested negative for ALS gene mutations, and individuals
    from the general population.)

Cohort 2- Must not have ALS or be known to be at risk of carrying a causative ALS gene mutation.

This may include spouses of ALS participants, family members of people with known ALS mutations who have tested negative for the family ALS causative gene mutation and other ALS gene mutations, and members of the general US population and others encountered at ALL ALS Sites.

Who CAN NOT Participate in the ASSESS Study?

  • Significant cognitive impairment, clinical dementia, or unstable psychiatric illness
  • Noncompliance with protocol requirements
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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.

If you wish for a member of the study team to contact you about the ALL ALS Consortium, please click the button below:

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