ALS Research Collaborative | ALS Therapy Development Institute

Your Story. Our Science.
Building Hope in ALS Research.

Join the ARC Study

Advance ALS research from home by sharing your story.

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 your Participant Portal

What is the ARC Study?

ARC is an ongoing observational study that invites people with ALS to share their story by contributing data about their family, work, medical history, and more – and it can all be done from home! Your information has the potential to reveal new risk factors for ALS – and potential avenues for treatment.

What Makes ARC Unique?

Participate from Home

Anyone with ALS can participate in the ALS study from home.
Global Impact

ARC data is de-identified and shared to advance global ALS research.
Ever-Evolving

Participation in the ARC study will continue to grow, and we aim to add new data types to build upon the wealth of information housed in the ARC Data Commons.
Over Eight Years of Data

ARC is an evolution of ALS TDI's Precision Medicine Program (PMP), the longest-running natural history study in ALS.
Comprehensive Data

The ARC study captures data related to biology, symptoms, and lifestyle.
View Your Data

All ARC participants can view their own data in a personalized online portal.
Won't End Until We END ALS

We intend to continue the ARC study until we have the knowledge to develop effective treatments for everyone with ALS.

Access Your Own ALS Data

As an ARC study participant, you have access to a personalized portal where you can view your own data and monitor changes in your symptoms.

You may choose to share these data with your healthcare team to monitor interventions and make informed decisions about your treatment.

Impact of ARC Data

Dr. Anoopum Gupta: Collaborating with ALS TDI to Advance More Accurate Digital Biomarkers for ALS

ALS TDI speaks with Dr. Gupta to learn how new digital biomarkers could pave the way for f...

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ALS Therapy Development Institute, Answer ALS, and Microsoft Announce Groundbreaking Data Sharing Collaboration

ALS Therapy Development Institute, Answer ALS, and Microsoft Announce Groundbreaking Data ...

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ALS TDI Awarded CDC Funding to Accelerate Identification of ALS Risk Factors

ALS TDI has received a substantial grant from the Centers for Disease Control and Preventi...

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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

What Data Can ARC Participants Share?

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.

Sample Collection

Participants who meet specific criteria* can conveniently provide blood samples from home through monthly visits by an in-home phlebotomist.

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.

ALSFRS-R Tracking

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

Speech Tracking

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

Genetic Screening***

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

Movement Tracking

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

*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 induced pluripotent stem 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 Global Impact of ARC Data

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

Thank you to all of our amazing ARC participants who have shared their data to advance research.

Unlock the Power of Your Story

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.

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

Enroll Now

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

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.

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