ALS Therapy Development Institute

Precision Medicine Program

The Precision Medicine Program (PMP) at the ALS Therapy Development Institute is the world's premier partnership between scientists and people with ALS to identify treatments and cures. This pioneering partnership has resulted in the creation of the largest, patient-linked database integrating ALS genetics, voice recordings, lifestyle, demographics and accelerometer data. Read more below and enroll today!

Sign Up for PMP PMP Portal Donate

Why should you do this?

Because we need treatments for ALS already! Your ALS experience is unique and for the first time, researchers acknowledge that ALS is a complex disease with many different subtypes. Only by listening to people with ALS, collecting unbiased data about your past and your progression today can we classify the subtypes of ALS and screen and target treatments more precisely. Only with your participation in PMP can we accomplish this goal. Learn More

Signing up for PMP will ensure that you matter in ALS research. This program will enable you to add your information and your data to the battle to find treatments and cures. You should do this because without you participating actively in ALS research we won't have much needed information to defeat ALS.

PMP is designed based on observations made in the program already that signal the opportunity to advance subtype identification by adding data from more and more people with ALS. PMP data may also be used to understand the potential use of wearable technology as a tool to accelerate all ALS clinical trials; something, which is globally accepted by the ALS medical research community as an urgent need. With PMP we aim to collect the following as quickly as possible:

  • 10,000 ALSFRS-R scores
  • 10,000 speech recordings
  • 10,000 exercise datasets using accelerometers
  • 10,000 medical and personal history survey responses

Only by creating an unbiased database of information in true partnership with people living with ALS today do we believe we can identify the subtypes of ALS and work rapidly toward screening potential treatments for each. Ready to be a partner in research? Sign up for PMP! If you have a question about PMP before signing up, email pmp@als.net.

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PMP PROGRESS

(Last updated Sunday, April 22, 2018)

  How many patients are enrolled?

 

  How much data has been entered in the PMP?

 

  How many cell lines have been created?

  How many genome sequences have been completed?

 

I want to sign up for PMP

What do you get?

You will know that your data, your experience with ALS, and your battle is part of the most focused and experience effort to end ALS in the world. Your data will matter to ALS researchers and actually be used. You will get access to a secure online portal where all of the data you provide lives as part of the Precision Medicine Program. You will be able to explore your own progression rates and follow how various interventions impact your progression rates. You will be able to access regular updates by checking your private password protected portal and through webinars.

“Each PMP participant becomes a partner in research and will have access to their own data in real time, making this a uniquely transparent approach to clinical research.”
Steve Perrin, Ph.D.
CEO / CSO

 

I want to sign up for PMP

Unlike other research studies you may enroll in, in PMP you will get access to the data you provide. This is relatively unique as most research studies done in ALS don’t provide data back to the people enrolled in them. But we feel differently, we feel that people with ALS must be treated as partners in research, not simply the subjects of research.

While it is paramount to note that the Precision Medicine Program is a research study and no experimental medication will be provided, many people in the PMP find that by participating in the program they gain knowledge and tools to track their own disease progression. Some people use these tools to help inform the decisions they are making in collaboration with their medical team about their own treatment and care. Here are a few examples of what you will find in the secure online PMP portal to enter and explore your data:

PMP Login

 

Tracker Activity

 

ALS FRS

 

Only by creating an unbiased database of information in true partnership with people living with ALS today do we believe we can identify the subtypes of ALS and work rapidly toward screening potential treatments for each. Ready to be a partner in research? Sign up for PMP! If you have a question about PMP before signing up, email pmp@als.net.

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How does it work?

Signing up for PMP is as easy. Click here or on any Sign Up button on this page. You will be sent an email activation link which will get you going on building the first data points needed in the PMP, including reviewing important HIPPA compliance and informed consent forms as well as answering basic medical questions about you and your experience with ALS so far. From there, you will be enabled to add thousands of pieces of information to the battle to identify subtypes of ALS against which more precise treatments can be screened. See the graph below for more information about PMP works for you and researchers 100% focused on ending ALS at the ALS Therapy Development Institute.

I want to sign up for PMP

PMP is designed based on observations made in the program already that signal the opportunity to advance subtype identification by adding data from more and more people with ALS. PMP data may also be used to understand the potential use of wearable technology as a tool to accelerate all ALS clinical trials; something, which is globally accepted by the ALS medical research community as an urgent need. With PMP we aim to collect the following as quickly as possible:

  • 10,000 ALSFRS-R scores
  • 10,000 speech recordings
  • 10,000 exercise datasets using accelerometers
  • 10,000 medical and personal history survey responses

Anyone with ALS can add their data to PMP - regardless of where you live, or what stage of the disease you are at. Got an ALS diagnosis – we need you in PMP! However, to help understand the potential power of various measures of disease progression being explored, we will ask some people with ALS that meet specific criteria set by our clinical team to wear accelerometers for example. If you have a question about PMP before signing up, email pmp@als.net. Regardless of where you are at in your disease progression, we need your data. Join PMP now!

Impact of Ice Bucket Challenge on ALS Research (June 9, 2015)
WATCH

Precision Medicine Program Data & Update (February 9, 2016)
WATCH

Only by creating an unbiased database of information in true partnership with people living with ALS today do we believe we can identify the subtypes of ALS and work rapidly toward screening potential treatments for each. Ready to be a partner in research? Sign up for PMP! If you have a question about PMP before signing up, email pmp@als.net.

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WHAT PARTICIPANTS CAN EXPECT

 

Prescreen

Enroll

Enroll online to get started in the Precision Medicine Program.

Speech Tracking

Speech Tracking

You will be able to record a sample phrase once a month to help us interpret changes in speech.

ALSFRS-R Tracking

ALSFRS-R Tracking

You will be asked to complete an ALSFRS-R form once a month online.

The Revised ALS Functional Rating Scale is a questionnaire-based scale used to measure participant's ability to perform physical activities in everyday life. Data can be useful in pre/clinical trial.

Surveys

You will be asked to complete surveys on topics such as family history, geography, lifestyle, medical history, occupation and your ALS experience.

Activity Tracking

Activity Tracking

Not everyone enrolled in PMP is required to do movements (compared to the first phase of PMP when these were required by all). Instead, our team will identify participants whose profiles meet criteria and they will be provided with accelerometers. If you meet these criteria, you will be contacted by a member of our team.

Sample Collection

Sample Collection

Not everyone enrolled in PMP is required to donate samples (compared to the first phase of PMP when these were required by all, and have since been used to generate hundreds of genomes and cell lines). Instead, our team will identify participants whose profiles meet specific criteria and they will be provided with an in-home blood sample collection kit. If you meet these criteria, you will be contacted by a member of our team.

 

I want to sign up for PMP

Want to fund an end to ALS?

The ALS Therapy Development Institute is a 501c3 nonprofit organization. We are the world's largest independent ALS research organization and have advanced ALS research in revolutionary ways for the past 15 years. We breakdown walls and solve the problems inherent in the drug development process. We are the most highly rated ALS nonprofit in the world according to CharityNavigator.com. Most important to you though is how we spend the money donated to us. Fact is, we spend a greater percentage of every dollar donated on ALS research than any other nonprofit in the world. So if you want to ensure that your philanthropic donation actually goes immediately to ALS research, there is only one choice – making that gift to the ALS Therapy Development Institute.

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