ALS Research Collaborative | ALS Therapy Development Institute

Unlocking the power of data and collaboration to end ALS

Thank you to our amazing participants who have graciously shared their photos with us and you!

Join the Most Comprehensive Natural History Study in ALS

If you're living with ALS, or an asymptomatic gene carrier, your participation in the ALS Research Collaborative (ARC) can help to inform our research to find treatments for ALS - and it can all be done from home.

Join the ARC Study Sign in to the Participant Portal

Your Data: Advancing ALS Drug Discovery

As a partner in the ARC study, you will be invited to contribute data about your medical history, lifestyle, and/or disease progression. The more data that we have, the more we can learn about why ALS impacts people so differently, and how to effectively treat it.

Unlike many other studies, the de-identified data that is contributed through ARC is shared with researchers around the world – so your data can help to advance the global effort to find effective treatments for ALS.

Enroll Now

The ARC Study is an evolution of the Precision Medicine Program. To learn more, click here.

As a Participant You can:

Help End ALS

Your de-identified data will be shared with researchers around the world who are working to end ALS

View Your Data

See data about your disease in a personal online portal to track the effects of interventions and share your data with your clinical team

Share from Home

Easily submit data through your virtual portal from the comfort of your home

No travel is required

Join a Global Effort

Become a part of the longest running natural history study in ALS by joining more than 800 participants

Enroll in the ARC Study to become a participant

Participants will not be given treatments or medical advice from ALS TDI

How ARC Data Are Shared

Through the newly launched ARC Data Commons – a cloud-based data-sharing platform – ALS TDI can now share these de-identified data from people with ALS around the world. The ARC Data Commons invites researchers from across the ALS space to easily search and analyze these data so that they can better define ALS patient subsets and discover targets for drugs.

Learn about the ARC Data Commons

What is a Natural History Study?

A natural history study is an ongoing preplanned observational study intended to track the course of the disease. Its purpose is to identify demographic, genetic, environmental, and other variables that correlate with the diseases development and outcomes.

Alan Premasiri, Senior Manager, Clinical Operations

What data do we collect?

All data submitted through ARC is de-identified and you have the option to choose what data you submit.

By signing up for ARC, you may be asked for data related to:

Personal background

Complete surveys on topics such as family history, geography, lifestyle, medical history, occupation and your ALS experience.

Electronic Health Records

You have the option to easily integrate your Electronic Health Records (EHRs) into the ARC study. An EHR is an electronic version of a patient's history and care that is maintained by their medical provider over time.

Speech Tracking

Record a few sample phrases each month to assess changes in your speech.

Movement tracking

Participants who meet specific criteria* will be provided with accelerometers on a monthly basis to quantify movement.

Sample collection

Participants who meet specific criteria* will be provided with an in-home blood kit or other types of sample collection kits.

ALSFRS-R tracking

Complete an online ALSFRS-R** form once a month.

Genetic testing***

Participants who meet specific criteria* will be provided with genetic testing information.

*If you meet these criteria, you will be contacted by a member of our Clinical Operations Team

**The Revised ALS Functional Rating Scale (ALSFRS-R) is a questionnaire-based scale used to measure participant s ability to perform physical activities in everyday life

***Genetic testing for the ARC study does not provide a clinical-grade genetic test

How ARC Data Advances ALS Research

Drug Target Discovery

We study participant data to find new drug targets and identify the ALS populations for which they are most relevant

Identification of Promising Drugs

We test potential ALS treatments in iPS cell models that were developed from ARC participants samples

Biomarker Discovery

We analyze blood, movement, and voice data to identify new biomarkers that can better track ALS disease progression

The Evolution of ARC

ARC is an evolution of ALS TDI's Precision Medicine Program (PMP) – the longest-running natural history study in ALS. The PMP was initially made possible through funds raised by the ALS Ice Bucket Challenge and ALS TDI will continue to collect data through the ARC study.

Now, the ARC Data Commons will provide access to all data collected by the PMP since it began in 2014, as well as continue to integrate data from multiple ALS clinical research programs.

Learn more

"I just feel like I'm working right with the researchers and the scientists. I'm actually a part of the research. Whatever time I have here, I’m going to try to use it to spread the word, he says to spread awareness, and hopefully to help find a cure."

- Tavares Speer,

ARC study participant, living with ALS

"There is value in having access to data that shows if a therapy, supplement, or other intervention is helping slow (or even accelerate) your disease progression."

- Phil Green,

ARC study participant, living with ALS