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)

 

Pathogenesis in C9ALS (PICALS) - RECRUITING

For patients with sporadic ALS, Patients with C9ALS, healthy blood relatives of people with C9ALS. 

Study details:

• Three visits over 12 months with the option of ongoing visits.  Will have exams, questionnaires and donate blood and spinal fluid. 
• Relatives of people with C9 ALS will have free genetic counseling and testing to learn results. 

CLICK HERE FOR THE FLYER

Contact Karon Simmons via email at 404-712-4182

 

PLS Natural History Study (PNHS)

The purpose of this study is to improve the current research status of Primary Lateral Sclerosis (PLS)
by studying the natural history of the disease to determine how it progresses without any drug
treatment. We’re hoping that information gained from this project will prepare the research
community for future clinical trials in PLS.

Study details:

• Clinic visits every 6 months for assessments
• Have been diagnosed with Primary Lateral Sclerosis (PLS)
• Have symptoms that started within the last 15 years
• Are at least 25 years old
• Have no family history of ALS or PLS

CLICK HERE for flyer with more information.
Contact Karon Simmons via email at 404-712-4182

Clinical Research in ALS (CRiALS) - RECRUITING

To learn more about neurological disorders
To contribute to Project MinE
Study details:

• 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 

TRACK ALS - ENROLLMENT CLOSED

The purpose of this study is to see whether we can acquire dependable at-home measurements of breathing, movement, speech and general function in an accurate way, and if that approach will allow more people to participate in clinical trials without repeated trips to the clinic.

Eligibility criteria:

• You must be between the ages of 18 and 90 years old
• You must own a smartphone device with Bluetooth capabilities
• You must have continuous internet access at home

This study is a collaboration between Emory University and the Barrow Neurological Institute, and is sponsored by Mitsubishi Tanabe Pharma Holding America.

ALS OUTCOME MEASURES (DOD) - NO LONGER RECRUITING

• The purpose is to validate and create new scales to track ALS disease progression.
• The goal of this study is to develop better tools for ALS research, allowing for more efficient studies

Study details:

• For any patient with ALS residing in the United States
• Participants will complete questionnaires about their ALS every month for 6 months. Participants will also complete questionnaires 1 time by phone and will have 2 neurologic exams by video teleconference. 
• No in-person visits are required.

 

 Tissue Donation - click here for brochure