Target ALS Research Cores General FAQ
How can I or my lab access the Target ALS Research Cores?
The applications for use of most of our Core Resources are available on the relevant Target ALS webpage.
Applications for longitudinal biofluids and postmortem tissue require an experimental proposal and statement of scientific rationale. All applications are subject to a review process. The goal for both of these Core Resources is to provide access to human samples and tissue to everyone who requests them, although some alterations may be required to the proposed work.
To access the Target ALS Data Engine, a short description of planned work and a work email are required. Data added to the Engine after you have access will automatically be accessible to you.
Our induced pluripotent stem cell lines from ALS patients and controls are banked at NINDS. Following the link on our webpage to the NINDS portal will allow you to apply. The process is straightforward and all tools you need are available within the steps of the application.
Below are the direct links for ease of access:
Longitudinal Biofluids Core
Postmortem Tissue Core
Pluripotent Stem Cell Core
Target ALS Data Engine (includes data from all of the above Core facilities)
Reagents Core
To receive updates about what is available in our Core Resources, subscribe to our research-focused mailing list.
What is the cost to access the Target ALS Research Cores?
In most cases, researchers are expected to pay the cost of shipping. Early stage researchers in the Target ALS ecosystem access all Target ALS Core Resources free of charge for the lifetime of their grant. There is a nominal fee to order the Target ALS iPSC lines and Target ALS Postmortem tissue. Access to the Target ALS Data Engine is free of charge.
Can researchers from academia and industry use the Target ALS Research Cores?
In short, yes. In some cases, industry researchers may need to pay a higher fee to access our Research Cores.
Does Target ALS ask for any IP from work that results from the use of Target ALS Research Cores?
No. As part of our mission to break down barriers to ALS research, Target ALS never asks for IP. All intellectual property resulting from work performed by researchers using our Core Resources is owned by those researchers.
Does Target ALS place an embargo on publication of results from work that includes use of Target ALS Research Cores?
No, Target ALS does not embargo publications. We do ask for authorship or acknowledgement on publications that use our Research Cores. The application process for the individual Core will clarify authorship requirements.
What about mammalian models of ALS?
As part of our strategy to provide “no-strings-attached” access to critical research tools, we are looking for collaborators to develop new animal models and to generate multi-omic datasets in mouse models to share with the community. We have no active projects at this time.
We offer annual funding calls in partnership with CROs in order to test candidate ALS therapeutics in standardized mouse models. Please watch our Funding Opportunities webpage and look for In Vivo Target Validation to apply for one of these opportunities.
Do you have materials available from the same person in the Target ALS Postmortem Tissue, Longitudinal Biofluids, and Stem Cell Cores?
Currently, no. Our goal is to recruit separately for our Postmortem Tissue and Longitudinal Biofluids Cores, but individuals interested in contributing to both are able to do so. Individuals of this nature will be noted in the Data Engine. The Stem Cell Core does not contain iPSCs generated from the individuals who have contributed to the other two Cores.
How do you ensure that funded ALS research adheres to ethical and non-biased standards?
Funded ALS research is ensured to adhere to ethical and non-biased standards through rigorous peer review processes, institutional review boards (IRBs), and oversight by ethics committees. These mechanisms assess research proposals, ensure participant welfare, and verify the integrity of the research design. Additionally, transparency, disclosure of potential conflicts of interest, and adherence to established research ethics guidelines contribute to maintaining ethical and unbiased standards in ALS research.
Stem Cell Core FAQ
How can I or my lab access the Target ALS Research Cores?
The applications for use of most of our Core Resources are available on the relevant Target ALS webpage.
Applications for longitudinal biofluids and postmortem tissue require an experimental proposal and statement of scientific rationale. All applications are subject to a review process. The goal for both of these Core Resources is to provide access to human samples and tissue to everyone who requests them, although some alterations may be required to the proposed work.
To access the Target ALS Data Engine, a short description of planned work and a work email are required. Data added to the Engine after you have access will automatically be accessible to you.
Our induced pluripotent stem cell lines from ALS patients and controls are banked at NINDS. Following the link on our webpage to the NINDS portal will allow you to apply. The process is straightforward and all tools you need are available within the steps of the application.
Below are the direct links for ease of access:
Longitudinal Biofluids Core
Postmortem Tissue Core
Pluripotent Stem Cell Core
Target ALS Data Engine (includes data from all of the above Core facilities)
Reagents Core
To receive updates about what is available in our Core Resources, subscribe to our research-focused mailing list.
What is the cost to access the Target ALS Research Cores?
In most cases, researchers are expected to pay the cost of shipping. Early stage researchers in the Target ALS ecosystem access all Target ALS Core Resources free of charge for the lifetime of their grant. There is a nominal fee to order the Target ALS iPSC lines and Target ALS Postmortem tissue. Access to the Target ALS Data Engine is free of charge.
Longitudinal Biofluids Core FAQ
What is the enrollment goal and how many participants are currently enrolled in the study?
The enrollment goal is 800 people living with ALS and 200 healthy controls (not including presymptomatic gene carriers) in the Global Natural History Study. 14 sites are currently enrolling participants internationally and >170 individuals are currently enrolled. This resource is rapidly expanding; please check back on our website or reach out to us for updated enrollment information.
Below is an estimate of the number of vials of samples available for request from the individuals currently enrolled:
>3000 vials of urine
>2500 vials of serum
>4500 vials of plasma
>3500 vials of CSF
Your goal is to enroll diverse constituents into this study. Can you provide a breakdown of ethnicity for currently enrolled participants whose samples are available for request?
You can see a breakdown of ethnicity for enrolled participants who have undergone whole genome sequencing in our Data Engine. Target ALS is also launching Outreach Studies, with the goal of enrolling 5000 individuals from underrepresented genetic backgrounds for a one-time blood draw. You will not be able to request these blood samples, but you will have access to long-read Whole Genome Sequencing data from these participants through our Data Engine.
What is the enrollment goal and how many participants are currently enrolled in the study?
The enrollment goal is 800 people living with ALS and 200 healthy controls (not including presymptomatic gene carriers) in the Global Natural History Study. 14 sites are currently enrolling participants internationally and >170 individuals are currently enrolled. This resource is rapidly expanding; please check back on our website or reach out to us for updated enrollment information.
Below is an estimate of the number of vials of samples available for request from the individuals currently enrolled:
>3000 vials of urine
>2500 vials of serum
>4500 vials of plasma
>3500 vials of CSF
Your goal is to enroll diverse constituents into this study. Can you provide a breakdown of ethnicity for currently enrolled participants whose samples are available for request?
You can see a breakdown of ethnicity for enrolled participants who have undergone whole genome sequencing in our Data Engine. Target ALS is also launching Outreach Studies, with the goal of enrolling 5000 individuals from underrepresented genetic backgrounds for a one-time blood draw. You will not be able to request these blood samples, but you will have access to long-read Whole Genome Sequencing data from these participants through our Data Engine.
What is the collection procedure for the individual biofluids?
We are happy to provide this information to ALS researchers upon request. Please contact us.
Is clinical data collected on participants in the Natural History Study whose samples are provided in the Longitudinal Biofluids Core?
Yes. You can access clinical data, demographic information, and functional information about participants in the Target ALS Data Engine.
Are the participants who provide biofluids the same participants whose samples undergo multi omics analysis (are the data matched)?
Yes. While we can’t guarantee that participants will all provide all requested biofluids at each visit in the course of the longitudinal study, samples from the same participants are collected for multi omics analysis and for distribution to the worldwide ALS research community.
What is the turnaround time on receiving samples requested from the Longitudinal Biofluids Core?
Our Independent Review Committee meets every month to review these requests. Once requests are approved, average turnaround time to sample delivery (including MTA process) is ~70 days and decreasing.
Can I get involved in data analysis and production of data for the broader ALS research community using samples from the Target ALS Longitudinal Biofluids Core?
Please reach out to us. We are happy to chat about datasets you may have that are of interest to the global ALS research community.
Target ALS Data Engine FAQ
What data is currently available on the Target ALS Data Engine?
For our Postmortem Tissue Core, we currently have WGS, spatial transcriptomics, bulk RNA sequencing, and histopathological data in the Engine. For our Longitudinal Biofluids Core, we currently have WGS, digital health data and clinical metadata in the Engine. For our Stem Cell Core, we currently have WGS and RNA sequencing data in the Engine. For more details and up-to-date information, please create an account. It is free to sign up.
How often is new data uploaded?
We aim to upload new data every quarter.
What data is anticipated to be included on the Target ALS Data Engine in the future?
We anticipate including numerous data types in the future, including multiomics analysis from our Longitudinal Biofluids Core and our own commonly requested analyses (e.g. variant calling) of our raw data.
Can anyone join or access the Data Engine?
Our goal is to make this data accessible to ALS researchers worldwide. Reach out if you have a question about your eligibility to request access.
How much does it cost to work with the data?
You can find detailed answers in the User Manual once you sign up to access the Data Engine, but here are some quick numbers:
Once you have set up your environment in Workbench and you begin to store data, storage fees of $0.02/GB/month are incurred.
For compute fees, you pay for (from most expensive to least expensive) GPUs, CPUs, Memory, and Disk. For example, the default size machine can browse data, download data, and run notebooks. It has 0 GPU, 2 CPUs, and 13 GB of Memory. This costs $0.14 per hour, plus $8.80 per month for 250GB attached disk.
Download of data to your own computer incurs a fee. For example, 10 TiB data at a rate of $0.08/GiB will cost just over $800.
Target ALS Reagents Core FAQ
How much of each antibody can I request?
Our goal is to provide sufficient reagent for groups to accomplish their experiments. There are individual limits for each antibody available on the Target ALS website. Please reach out if you need to request more than the listed volumes.
For antibodies available at DSHB, please contact their team by emailing dshb@uiowa.edu
Do you have validated protocols for using these reagents?
For some of our reagents, scientists from the Target ALS ecosystem have kindly provided their protocols for use. Please see the Target ALS website for more details.
Target ALS Postmortem Tissue Core FAQ
Is frozen and fixed tissue available in the Postmortem Tissue Core?
Yes. You can specify the tissue of interest in your application.
Are there samples available from multiple nervous system regions in the Postmortem Tissue Core?
Yes. You may request the brain and spinal cord regions of interest in your application.
Do I need to have tested my experimental modality or paradigm in human tissue before requesting samples from the Target ALS Postmortem Tissue Core?
No. The Postmortem Tissue Core Heads may send you material from less requested regions of interest to pilot your assay in advance of sending tissue for your full experiment.
What is the turnaround time on receiving tissue requested from the Postmortem Tissue Core?
Our Independent Review Committee meets every quarter to review these requests. We aim to fulfill approved requests as quickly as possible.
Do you have more questions? Check out our general FAQ
