Target ALS Community-Based Pop-Up Clinics
With a one-time blood draw, participants in pop-up clinics are helping explore genetic and environmental determinants of ALS in all communities.
A powerful expansion of ALS research
ALS affects people of all ancestries, yet about 95% of participants in previous ALS research studies and clinical trials were Caucasian. We’re changing that and expanding our understanding of ALS in everyone.
Understanding genetic and environmental factors in diverse populations is critical for developing effective therapies. Our Community-Based Pop-Up clinics are addressing this significant gap by organizing one-day pop-up blood collection initiatives across various communities in collaboration with ALS clinics and organizations. Through this effort, we’re empowering underserved communities by facilitating access to participate in research.
Find out where your nearest pop-up clinic is to participate today.
How it works
The study is designed to be simple and easy. Within 60 minutes, participants donate blood, saliva, and answer a few questions. One hour of your time will make a powerful difference in the fight against ALS.
The process
In this study, we will collect blood from at least 5,000 people with ALS and 1,000 healthy controls (people who do not have a known ALS genetic mutation at the time of participation).
Along with the blood sample, participants will fill out a questionnaire about their health history and living environment. People with ALS will also complete the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS), a measurement of their disease progression, 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 a 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.
The power of your samples
Your blood sample will go through long-read sequencing, giving scientists a more detailed view of genes than other techniques, helping uncover novel genetic factors involved in ALS. To learn more about this cutting-edge technique, go to PacBio HiFi’s Sequencing 101 page
https://www.pacb.com/blog/long-read-sequencing/
Like everything collected through our ALS Global Research Initiative (AGRI), your data will be made available to researchers almost instantly to fuel discoveries today, not down the line. Our pop-up clinics aim to understand ALS across diverse communities and speed the path to effective treatments for everyone.
The steps to immediate impact
- Environmental Questionnaire
- Self-Report ALSFRS (ALS Patients)
- DNA Sample Collection
- Optional Saliva Collection
Upcoming pop-ups near you
See where a pop-up clinic is available near you. All participants who take part in this study will also receive a gift card from Target ALS as a thank you for participation and reimbursement for parking expenses.
Our goal
Because the diversity of participants in ALS research studies has historically been limited, we’re providing opportunities for underrepresented groups to participate in research. By learning more about ALS across different races, ethnicities, and environments, we’re helping scientists develop treatments for everyone with ALS.
The purpose of this study is to perform a one-time, blood collection, that will be used for long read whole genome sequencing to help doctors, scientists, and the research community understand a broader scale of backgrounds and health factors.
With the samples we collect, researchers can look closely at large amounts of genetic information by sequencing, or reading, every letter in DNA.
Primary objectives
- Perform whole genome sequencing (WGS) on all DNA samples collected from people living with ALS and Healthy Control Participants. Long read sequencing is proven to detect many more genetic variants than short read sequencing and can help uncover new genetic causes of disease.
- Collect 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)
- Collect 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.
- Gather 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