Update on research funds – two new projects

I AM ALS is launching two new projects that will quicken the development of treatments and cures for ALS. 

Focused on infrastructure to increase data sharing and standardize ALS clinical coding, these projects were identified as highest need by a task force convened over the course of several months to identify research efforts that will accelerate the speed of ALS research. Taskforce members include ALS community members along with I AM ALS staff and Board members. 

Project 1 – Universal Consent 

The first project aims to facilitate data sharing among ALS researchers by creating and implementing universal informed consent language to be systematized across every ALS research initiative in the U.S. The goal is to reduce the barriers to data sharing, since a major hurdle communicated by researchers is that participants have not already consented to sharing their data outside of that specific study environment. Introducing universal consent language will aid in sharing between investigator teams and institutions to help research move forward faster. Our ultimate shared goal is for mistakes, dead ends, and failures to be avoided and promising treatments to come to fruition quickly and efficiently.

Project 2 – Standardized Clinical Trial Coding

Getting to the point of an ALS diagnosis is a long and arduous process for most individuals, since there is no test or standard method of documenting symptoms or diagnosis. Most receive their diagnosis through a collection of symptoms and the elimination of other possibilities. This also means that researchers have not systematized a common data model for capturing ALS information.

This research project aims to remedy this problem by creating and implementing a universal common “coding” system in ALS healthcare and research. While this might sound unimportant, universal coding will provide more accurate data on individuals living with ALS, common symptoms, pre-diagnosis experiences, and more. This initiative will also focus on institutional adoption so that research and practice settings are implementing the standard coding procedures. With greater awareness, we will speed time to diagnosis and increase the eligibility pool for clinical research.

Both research projects will require an intensive needs assessment to understand stakeholder needs and barriers at all levels, and to create a feasible approach to both solutions. 

Please stay tuned for an open call for community members who wish to serve on the research working group.

Research Funding

Excitingly, I AM ALS is able to launch these projects in 2023 because we have raised enough funding to do so. Thank you to our supporters for your investment in these critical steps towards new ALS treatments and cures! As of May 1, 2023, I AM ALS has paused all restricted funding towards research while we get these underway and learn more about future research funding needs.

This pause does not mean that I AM ALS is no longer focusing on research. The organization is thoughtfully engaged in a new phase of implementation where we will be utilizing existing funding and will not put out a call for additional support until or unless we know that is needed for future research endeavors, or to propel these two projects into a later solutions phase.

We have also learned our strengths and are now leaning into them. As such, I AM ALS also continues to advocate for increasing federal funding for ALS research, promote the PaCTD rating system and Morris ALS Principles as standards for research design and implementation, and hold the FDA accountable to implementing their 2019 Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry. These are our primary paths to success.

As always, please contact us if you have any questions or would like to get involved. 

Now, let’s end ALS.

We will find cures for ALS. The only question is when. That answer depends on you.

Stay informed on I AM ALS’ progress and what you can do to help us make hope real.

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