The Study
ALS affects people of all ancestries, yet approximately 95% of participants in previous ALS research studies and clinical trials were Caucasian. Understanding genetic and environmental factors in diverse populations is critical for developing effective therapies. Addressing these gaps, Target ALS is launching a one-day pop-up blood collection initiative across various communities in collaboration with ALS clinics and organizations.
This study will involve a one-time blood draw from 5,000 individuals with ALS and 1,000 healthy controls. Participants will also complete a questionnaire on lifestyle and environmental factors, and ALS patients will fill out an ALS Functional Rating Scale (ALSFRS). Educational resources will be provided, including information on genetic testing for those interested.
Additionally, a sub-study will include microbial sequencing for the first 80 consenting participants, who will also complete a dietary habits questionnaire to explore potential links between diet and ALS. Through this effort, Target ALS aims to empower underserved communities by providing resources and facilitating access to critical research.
The IMPORTANCE
Target ALS knows that to truly understand ALS, we must explore every piece of the puzzle.
Participating in research empowers people to take control of their health and shape the future well-being of their communities. Studying genetic and environmental factors in populations often overlooked in ALS research is critical to understanding the disease and identifying better treatments for everyone. By participating in this community-based pop-up clinic and donating your blood, you are equipping the scientific community with much-needed resources to better understand ALS.
THE GOAL
The purpose of this study is to perform a one-time, blood collection, that will be used for whole genome sequencing to help doctors, scientists, and the research community learn more about ALS across different races and ethnicities. Researchers can look closely at large amounts of your genetic information by sequencing, or “reading”, every letter in your DNA (your genome). Reading a person’s entire genetic code is called whole genome sequencing.
PRIMARY OBJECTIVES
- Perform whole genome sequencing (WGS) on all DNA samples collected from people living with ALS and Healthy Control Participants.
- Collection of clinical data including the ALSFRS and environmental and epidemiological survey from people living with ALS and Healthy Control participants to conduct correlation analyses.
SECONDARY OBJECTIVES
- Conduct microbial sequencing on approximately 80 individuals (40 ALS and 40 Healthy Controls).
- Collection of the REAP- S.v2 questionnaire, which enables the stratification of people based on general dietary habits without reliance on detailed daily caloric counting or meal diaries.
- Gathering of feedback on barriers to care and resources in the ALS community from ALS participants and healthy controls in the form of a post-study follow up survey.
How it works
We’ve designed this study to be simple and easy, where in just a few hours, you can easily donate your blood, saliva and answer a few questions. Your time will make a powerful difference in the fight against ALS.
In this study, we will collect blood from at least 5,000 people with ALS and 1,000 healthy people. Along with the blood sample, participants will fill out a questionnaire about their health history and environment. People with ALS will also complete the ALSFRS and a survey asking about the symptoms they are experiencing. Blood samples will be analyzed using “long read” sequencing to identify novel genetic risk factors across this diverse population. All de-identified data from each patient will be shared with researchers globally almost in real-time through the Target ALS Data Engine.
There will be a smaller study within this research where the first 40 people with ALS and 40 healthy participants can choose to have their saliva analyzed for microbes. These participants will also be asked to complete questionnaire, which helps us understand their dietary habits. This information can help inform whether specific geographic locations or dietary habits or restrictions may lead to the presence of unique gut microbes that impact disease risk and progression.
FAQ’s
What is Target ALS?
Target ALS is a 501(c)(3) medical research foundation dedicated to breaking down barriers that slow down progress in ALS research. Since 2013, our unique Innovation Ecosystem has transformed the landscape of ALS research by accelerating the most promising scientific ideas into actionable drug development programs. We democratize access to advanced research tools, foster cross-disciplinary collaboration, and galvanize industry involvement, all driven by our core values of impatient optimism, deliberate disruption, and radical collaboration.
Why is Target ALS the best group to conduct this study?
Our streamlined workflow enables rapid data generation from participant samples, fueling our Data Engine with real-time information accessible to researchers worldwide. This approach ensures that every contribution is impactful, empowering the ALS community with meaningful advancements towards transforming ALS into a manageable disease, and ultimately building a world where Everyone Lives. Data from our Post-mortem Tissue Core has already fueled groundbreaking genetic findings that are leading to the development of novel therapies and biomarkers for ALS.
Who is leading this study?
This study is being led by Target ALS research scientists, in collaboration with ALS clinics and ALS non-profit organizations. To ensure the data we collect reflects the diversity of those living with ALS, we’re setting up pop-up clinics in underrepresented communities across the country. By leveraging our internal scientific expertise with our extensive network of clinical professionals, we’re committed to gathering data that reflects diverse genetic backgrounds and identifying barriers to research that can impact health outcomes, such as social and environmental factors and access to care for ALS treatment and diagnosis. This inclusive approach allows us to better understand ALS across all populations, bringing us closer to breakthroughs that can benefit everyone affected by the disease.
What do I need to do to participate in this study?
This study is a pop-up event, which means every event will be in a different location around the United States. To find out if there is an upcoming event near you, please complete the RSVP form, which will provide you with details on future events. It’s a straightforward process, and your involvement will make a meaningful impact in advancing ALS research.
I don’t have ALS, why am I needed?
Including healthy controls in ALS research is essential to understanding the disease and identifying effective treatments. As a healthy participant, you provide a vital comparison that helps researchers distinguish between changes specific to ALS and those that occur in the general population. This comparison allows scientists to pinpoint unique biomarkers and patterns linked to ALS, which are critical for developing accurate diagnostics and targeted therapies. By participating, you’re helping researchers build a complete picture of ALS, bringing us closer to breakthroughs that could transform it into a manageable condition and, ultimately, save lives. Your involvement makes a significant difference in the fight against ALS.
What happens to my data?
Participant data is stored in Google Cloud using DNAstack technology, built to maintain data privacy but also to allow for open science following standards created by the Global Alliance for Genomics & Health (GA4GH). Participants can check our website to see the study status and their impact on research.
I still have questions, is there someone I can contact?
Absolutely. If you have any questions about this study, please email hello@targetals.org. You can also use the Contact Us form linked here.
UPCOMING POP-UPS NEAR YOu
All participants who take part in this study will receive a $25 gift card from Target ALS, as well as reimbursement for parking expenses.
December 20th, 2024 | 9 am – 4 pm PST
Los Angeles Medical Center
Kaiser Permanente Facility
1505 N Edgemont St., 1st Floor, Los Angeles CA 90027
Parking Available: 1527 N Edgemont St., Los Angeles CA 90027
Target ALS is a 501(c)3 public charity.
For more information, visit www.IRS.gov.
To make a gift by mail, send a check or money order to Target ALS Fdn., Inc. at Target ALS, Inc. 244 Madison Avenue #1025 New York, NY 10016.
