Clinical Research

Clinical research studies involve people, but do not involve treatment with an experimental drug or testing of an experimental device. These studies may help doctors, researchers and scientists learn more about the disease, so that they may diagnose, prevent, treat or cure the disease. This type of research often does not directly benefits the participant, but the knowledge gained may help others in the future.

We are involved in a wide variety of clinical research projects at the Emory ALS Center. Participation in our clinical research projects ranges from a one-time blood donation to the most generous gift, tissue donation. Among these projects, we are studying people with ALS to gain knowledge about the genetic causes of disease in families with inherited ("familial") ALS, in addition to investigating whether there is a genetic predisposition or susceptibility to disease in patients with non-inherited ("sporadic") ALS. We are also investigating new techniques to diagnose ALS and measure disease progression. 

Clinical Research Opportunities

(no experimental drug treatment) 

Clinical Research in ALS (CRiALS) - RECRUITING

• For ALS patients, blood relatives and healthy unrelated volunteers
• Procedures include donation of a blood sample, skin sample and/or spinal fluid and an information questionnaire

Contact Jane Bordeau via email or at 404-727-1679 

Project MinE is a genetic research program that aims to map the full DNA profiles of at least 15,000 people with ALS and compare them with 7,500 control subjects (people without ALS or a family history of ALS). The program originated in the Netherlands and includes researchers from 15 countries, including The United Kingdom, Portugal, Ireland, Spain and Belgium. Our center is the US site and Dr. Glass is the lead investigator in the U.S. All Emory ALS patients are invited to participate by providing a blood sample for DNA, and (optionally) a small skin sample to create stem cells for further research.  

Emotional Experience of Participating in Research for People at risk of ALS/FTD

The purpose of this study is to understand the emotional experience of participants of ALS/FTD
observational research. Participants of this study must have undergone genetic testing, and either
been identified as mutation carriers, or opted out of receiving their test results.
Learning more about this can help improve the emotional experience for future participants in
such studies, and can also help researchers with study recruitment.

You are eligible to participate in this study if:
• You are 18+ years old
• You are fluent in English
• You have received genetic testing for ALS/FTD and were identified as a mutation carrier, or
have opted out of receiving genetic testing results
• You are participating in an observational study for asymptomatic ALS/FTD mutation carriers
(including PICALS, Pre-fALS, DIALS, and ALLFTD)

CLICK HERE for recruitment flyer.

If any questions, contact: niharika.jadeja@emory.edu 

 Tissue Donation - click here for brochure