The ALS Therapy Development Institute’s Precision Medicine Program (PMP) is the most comprehensive and longest running translational research study in ALS. Our researchers partner with people living with ALS around the world to share and gather data on medical histories, family histories, genetics, biomarkers, and patient cell biology to better understand the disease. Our goals are to discover new treatments for ALS and make clinical trials faster and more efficient.
You can sign up for the Precision Medicine Program here.
WHAT IS PRECISION MEDICINE?
Every person living with ALS is needed to advance research towards effective treatments for ALS. By enrolling, you become a partner in research while gaining access to helpful tools regarding your disease progression. Your data will be available for you to view on a secure online portal. Defined by the National Institutes of Health (NIH), precision medicine refers to “an emerging approach for disease prevention and treatment that takes into account people’s individual variations in genes, environment, and lifestyle… It is in contrast to a one-size-fits-all approach, in which disease treatment and prevention strategies are developed for the average person, with less consideration for the differences between individuals.”
HOW ARE WE MAKING A DIFFERENCE IN ALS?
In partnership with Google, we leverage their expertise in artificial intelligence to analyze the “big data” collected from our PMP, making significant strides towards the development of unbiased, quantitative and sensitive measures of ALS disease progression. Our ultimate goal is to streamline the drug development pipeline, making clinical trials faster and more efficient.
BECOME A PMP PARTNER
Every person living with ALS is needed to advance research towards effective treatments for ALS. By enrolling, you become a partner in research while gaining access to helpful tools regarding your disease progression. Your data will be available for you to view on a secure online portal.
HOW IT WORKS
Enroll in our PMP today! Visit www.als.net/precision-medicine/signup/ to complete the form. By signing up for the PMP, 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.
SPEECH TRACKING
You will be able to record a sample phrase each month to assess changes in your speech.
ACTIVITY 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.
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*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.