Precision Medicine Program Extension (PMP 2.0)

PMP 2.0 is an extension of the world's first Precision Medicine Program (PMP) dedicated to finding treatments for ALS. When you enroll in PMP 2.0, you are part of the overall Precision Medicine Program at the ALS Therapy Development Institute and join hundreds of other people with ALS in sharing data that help advance us in our mission to discover and develop effective treatments for ALS. Click here to view full trial protocol as approved by our IRB

IMPORTANT!
All data collected are analyzed cumulatively, regardless of whether a person enrolled in the initial PMP or in PMP 2.0. There is no need to re-register for PMP 2.0 if you are enrolled already in PMP. If you were not accepted to PMP originally, you are encouraged to sign-up for PMP 2.0.

Sign Up for PMP 2.0 Invest in PMP

 

Are you ready to be part of the progress?

We believe that every person with ALS is needed to advance research toward treatments and cures. Participating in PMP 2.0 will allow your data to achieve this goal. And by enrolling, you become a partner in research and will have access to your data and other data as part of the program. Become a partner with the world's first and most prestigious precision medicine program, and you will directly impact the pace at which we advance treatments into clinical trial.

With PMP 2.0:

 
I want to sign up for PMP 2.0

PMP 2.0 is an extension of the Precision Medicine Program at the ALS Therapy Development Institute. If you are already enrolled in the PMP, you do not need to enroll in PMP 2.0.

Make sure your data are counted!

PMP 2.0 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 2.0 we aim to collect the following as quickly as possible:

The graphs below show our progress towards this aim.

PMP PROGRESS (Last updated Tuesday, July 26, 2016)

  How many patients are enrolled?

  How much data has been entered in the PMP?

WHAT PARTICIPANTS CAN EXPECT

Prescreen
Enroll

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 2.0 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 2.0 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.

How will this help us go faster?

Fernando Vieira, M.D., director of research operations

What are iPS cells?

Jessie St. Martin, associate scientist

Your support is crucial

Jenny Dwyer, board member