Natural History of ALS and Other Motor Neuron Disorders

Purpose

ALS is a devastating degenerative disorder which leads to progressive disability and death in an average of four years. The cause is unknown and there is no effective treatment. This registry will ask participants diagnosed with ALS for clinical and demographic data to help researchers discover future treatments.

Procedures

The following types of clinical and demographic data will be collected: 
  • Diagnosis 
  • ALS history
  • Imaging results 
  • Family history 
  • Gene mutations 
  • Demographics (gender, ethnic group)
  • Medical history 
  • Medications 
  • Vital signs 
  • Labs

For more details about the data collected in this study, please contact Rebecca Zelmanovich:

Eligibility 

  • A clinical diagnosis of El Escorial of suspected, possible, probable, or definite ALS
  • Other Motor Neuron disorders, including but not limited to spinobulbar muscular atrophy (SBMA, Kennedy’s disease), Spinal Muscular Atrophy (SMA), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP)

For more details about eligibility criteria, please contact Rebecca Zelmanovich:

Age

18 to 65
65 and over

Gender

Male
Female

Can be done from home

No

Keywords

Amyotrophic lateral sclerosis, ALS - resources, ALS, Neurology

Principal Investigator

James Wymer, MD, PhD

Department

Neurology

Contact Information

Rebecca.Zelmanovich@neurology.ufl.edu

352-294-5030


Be an Informed Participant

Before deciding to participate in a research study, take time to learn about clinical research, how it's conducted and your rights as a research participant. Following are some helpful resources from independent sources. Always remember that a clinical research study is research, not treatment.

Know Who to Contact

  • Eligibility: For questions about a specific study and who is eligible to participate, call or email the contact person listed for that study.
  • Your Rights: For questions about your rights as a research participant, contact the UF Institutional Review Boards at 352-273-9600.
  • Feedback: For general questions or feedback about study listings, email the UF Clinical and Translational Science Institute at CTSI-Studies-L@lists.ufl.edu.

Other Resources

  • HealthStreet: Health-focused services, classes and events, and opportunities to participate in research.
  • ResearchMatch.org: Join a national registry of volunteers willing to be contacted about research studies.

For Research Teams