Thank you for your interest in the ALS Go-Digital Study! At this time, we are no longer accepting new participants for this study.

What is this study about?

Monitoring ALS symptoms usually requires frequent in-person visits to the doctor, which can be physically and emotionally exhausting. This at home study is looking to see if the use of digital health technologies can be an effective and more convenient option to track ALS progression.

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Why is volunteering in ALS research important?

The development and validation of digital technologies and remote data collection methods used by patients in the comfort of their homes could revolutionize the way clinical trials are operated and reduce the burden of frequent visits to the clinic.

31K +

Over 31,000 people in the U.S. are living with ALS.

Source: CDC

5K

Approx. 5,000 people in the U.S. are diagnosed with ALS each year.

Source: CDC

5-10%

About 5–10% of ALS cases occur within families.

Source: CDC

Who is this study for?


You are between 18 to 90 years old

You have been diagnosed with definite, probable, or possible ALS according to the modified El Escorial Criteria (EEC) or diagnosed with ALS using the Gold Coast Criteria

You are able to write even if not all are legible

You are able to use utensils to cut food, with or without assistance.

What do I have to do to participate?

Get started on the steps below right now to pre-qualify, and begin your participation in the study. Enrollment is online and easy. Earn up to $100 in gift cards.

  • Take a short online survey to check if you qualify for the study.
  • If you pre-qualify, a member of our research team will reach out to schedule a screening call to review the consent document and determine your eligibility. If you're not part of the MDA MOVR Study, we'll ask you to share your medical records.
  • If you are eligible, a member of our team will reach out to schedule your remote baseline visit where you will receive training on how to use the technologies for the study. You will be sent a study-specific Fitbit and iPad.
  • Over the course of 12 months, you will be asked to complete brief surveys and motor tests on the provided iPad, and wear the Fitbit everyday.
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Frequently asked questions

Do I need to be enrolled in the MDA’s MOVR Study to be eligible for this study?
No. Anyone who meets the eligibility criteria can join. You do not need to be in the MOVR study.
Why should I participate in this study?
This study is investigating the ability and effectiveness of digital health technologies for tracking ALS progression. By participating in this study, you may contribute to valuable research about ALS.
What is the objective of this research study?
The primary goal of this study is to evaluate the possibility of collecting data from ALS patients at home using Digital Health Technologies (DHT’s) which includes an Apple iPad and a Fitbit activity band; both which will be provided to you. You will not be required to visit your doctor any more than you already do in order to participate in this study.
What does participation entail?
If you think you may be eligible, you can take a short online survey to check if you pre-qualify for the study. If you pass prescreening, a member of our research team will reach out to schedule a screening call to confirm your eligibility, have you sign consent, and collect some additional information to determine eligibility.

If you are eligible, a member of our team will reach out to schedule your remote baseline visit, where you will receive training on how to use the technology for the study. You will be sent a Fitbit and iPad to use specifically for this study.

After the baseline call and training, you will be asked to complete two ALS surveys and a series of fine-motor assessments on the iPad provided each month for 12 months. You will also be asked to wear the provided Fitbit continuosly during the day.
When and how will I be compensated?
Participants can earn a total of $100 for completing the study, including $50 if you complete 6 months of study participation and another $50 if you complete 12 months of study participation. Compensation will be provided in the form of electronic gift cards.
What are the benefits and risks to participation?
Benefits: Although this study will not provide any benefit to individual research participants, it is hoped that it will produce information and data that ultimately could offer benefits to people with ALS such as reducing the burden of frequent visits to the clinic. You will have access to some of the data collected throughout the study, including the results of the fine motor assessments.

Risks: There are no physical risks associated with the study activities.
Who is organizing this study?
The study is being organized by Mitsubishi Tanabe Pharma America, Inc., a life sciences company focused on medical advancements in ALS.
If I'm currently enrolled in the MDA MOVR study where do I find my patient ID required for enrolling?
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Your participant ID may be found at the bottom of the e-mail you received about this study from your referring physicians’ office. If you cannot locate your participant ID, please contact your physician’s office where you enrolled in the Muscular Dystrophy Association MOVR study.
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