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)

TRACK ALS

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 be diagnosed with ALS in the last five years
• You must own a smartphone device with Bluetooth capabilities
• You must have continuous internet access at home

CLICK HERE for more information about participation.

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

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

ALS OUTCOME MEASURES (DOD) - 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.

CLICK HERE for more information.

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.  

 

 

Research Survey on ALS Genetic Testing--

Purpose is to understand the experiences of affected and at-risk individuals with ALS genetic testing-

(Collaboration with Srika Amin, grad student in Genetic Counseling)

Study details:

• For English speaking adults with ALS who have been offered genetic testing and

• Family members who have been offered genetic testing

Take online survey HERE.

Microbiome in the progression of ALS (MPALS)-  NO LONGER RECRUITING

• Micro-organisms in the gut communicate with the brain and play a role in some conditions.
• Does this play a role in the progressions of ALS?

Study details:

• For ALS patients with live in spouse/partner or caregiver
• Couples mail in saliva and stool samples three times over 6 months 

Contact Karon Simmons via email at 404-712-4182

 Tissue Donation - click here for brochure