How Can I Get Involved in Research if I am Ineligible for a Clinical Trial?

One of the most common questions we receive is – “How can I get involved in research?”

When most people think of disease research, they think of clinical trials, which test the safety and effectiveness of new medications. Not everyone can participate in clinical trials, but there are other ways you can help.

Besides clinical trials, you can join a patient registry, fill out surveys, and participate in observational trials – studies where doctors observe someone’s disease over time to learn about how it progresses.

Thanks to the outpouring of support from the ALS Ice Bucket Challenge, The ALS Association has been able to sponsor many promising observational studies taking place around the world. This work has helped scientists understand the disease in more depth, identify new drug targets and biomarkers for diagnosis, expedite clinical trials, and make DNA sequencing data available to the entire ALS research community.

Central to all our research collaborations are the people living with ALS and their families. We encourage you to speak to your doctor to learn how you can participate in research.

Below, we have listed some options for how you can get involved in research outside of clinical trials. With each study, we have linked to more information and details on how you can participate. In some cases, you can participate remotely, whereas some studies may require in-person clinic visits.

Please review the options below and talk to your doctor about what studies are right for you.

ALS Focus Survey Program

ALS Focus is an online patient- and caregiver-led program that surveys people with ALS and current and past caregivers about their needs and challenges throughout their ALS journey. With this program, The ALS Association aims to learn as much as possible about what it is like to live with and care for people with ALS. The robust data collected will ultimately benefit the entire ALS community by informing programs, policies, and advocacy efforts to improve quality of life. All data is anonymous and shared free of charge with the entire ALS community shortly after the survey closes. Over 2,000 people participate in the ALS Focus Survey Program already, and the group is continuing to grow.

Learn more about ALS Focus here.

For ALS Focus survey results visit here.

Northeast ALS Consortium (NEALS) Trial Search Engine

You can also find observational trials in your area through the Northeast ALS Consortium (NEALS). The ALS Association has partnered with NEALS for over 13 years and sponsors their clinical trial search engine, as well as a clinical trial liaison.

Here is how to use the NEALS clinical trial search engine to find an observational trial in your area:

  1. Go to: https://www.neals.org/als-trials/search-for-a-trial/
  2. Click the “Advanced Trial Search” tab
  3. In Study Factors Menu, click:
    1. Study status: Enrolling
    2. Type of study: Observational Study
    3. Location: click on the state you live in
  4. Click the “Search” button at the bottom of the page

The results will list all observational studies in your area, including all study sites and contact information.

If you have any questions about clinical trials or observational studies, please contact our NEALS trial liaison at (855) 437-4823 or at [email protected]. The liaison is available to answer all your questions, help you navigate the NEALS clinical trial database, and help you enroll in a trial.

National ALS Registry

The Centers for Disease Control and Prevention hosts the National ALS Registry, a national database of people with ALS. The CDC uses this registry to identify ALS cases across the U.S. to understand how common it is. They also collect critical information that will help clinicians and researchers study what factors contribute to the disease, so they can improve care for people with ALS. Anyone in the U.S. can enroll and fill out their information online. Once registered, you can opt in to receive information regarding enrolling clinical trials.

Learn more here.

Join the National ALS Registry here.

CReATe Consortium

The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium aims to advance therapy development for familial and sporadic (singleton) ALS and other related disorders. They seek to understand how a person’s genetics relates to their symptoms with the hope of discovering new ALS biomarkers. Biomarkers are a chemical or physical change in the body that a doctor can use to track a disease like ALS over time. Doctors can use biomarkers to diagnose ALS, monitor its progression, and measure whether treatments are working. CREaTe began at the University of Miami but has since opened sites across the U.S. and abroad.

Learn more here.

ALS Families Project

This program provides family members of individuals with genetic forms of ALS the opportunity to contribute to research focused on learning more about why motor neuron degeneration begins and how or why it progresses. This study provides genetic counseling and testing to help participants understand and manage their risk and determine if they want to learn their genetic status. This study will follow unaffected ALS gene mutation carriers on an annual basis to gather essential information that will ultimately help researchers develop novel therapies for the prevention and treatment of ALS.

Contact the ALS Families Project by email at [email protected]

Learn more here.

Pre-fALS Study

The most direct way a doctor can diagnose ALS is by noticing the symptoms. But if scientists could learn more about the signs of ALS in people before they show symptoms, they could potentially develop ways to diagnose and treat the disease earlier. This could lead to better outcomes for people with ALS.

The Pre-symptomatic Familial ALS (Pre-fALS) study aims to characterize the pre-symptomatic phase of ALS. Researchers are running observational trials to identify biomarkers that doctors can use to detect pre-symptomatic disease. Doctors could potentially use genetic biomarkers (genetic variants associated with ALS) to predict if and when someone will develop symptoms. They could also use genetic biomarkers to find a clinical trial that people with ALS could participate in. This study is led by Drs. Michael Benatar and Joanne Wuu at the University of Miami in Miami, FL., where they are currently enrolling participants.

Learn more here.

Through the ALS Research Collaboration (ALC) the University of Miami is also enrolling participants in other observational studies.

Learn more here.

Remember to talk to your doctor first about which observational studies are right for you. Your participation is paramount in moving ALS research forward quickly towards new treatments and cures. Thank you!

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