Clinical Trials
Clinical Care and Interventional Research
The Johns Hopkins ALS Clinic collaborates with several national and international ALS experts, clinical centers, and a vast array of health care professionals currently working on the many aspects of research in ALS. We seek out innovative and cutting edge clinical care research to offer our patients in our clinical setting. Our clinical interests stem from increasing the quantity and improving the quality of our ALS patients and their families daily lives. Our experts at the ALS Center are specifically interested in respiratory interventions like the use of the high frequency chest wall oscillation device and early use of non-invasive positive pressure ventilation. We are also interested in measuring and improving the quality of life of our patients through collaborative studies and interventions.
Research Studies currently enrolling participants:
• DNA Registry in ALS – Nicholas Maragakis, MD – Principal Investigator
• Early Bipap Use in ALS – Noah Lechtzin, MD – Principal Investigator
• Quality of Life in ALS – Andrea Corse, MD – Principal Investigator
• Retrospecitve Generation of ALSFRS-R Scores in ALS – Noah Lechtzin, MD – Principal Investigator
Research Studies no longer enrolling participants:
• Sodium Phenylbuterate (Phase 1) – Nicholas Maragakis, MD – Principal Investigator
Upcoming Research Studies not yet enrolling participants:
• Talampanel – Principal Investigator yet to be determined
National trial (Phase 3)
Planned start - Spring 2008
• Arimoclomol – Principal Investigator yet to be determined
National trial (Phase 1/2)
Planned start – Fall 2007
For more information about ALS Research Studies, please contact:
Lora L. Clawson, MSN, CRNP, Director of ALS Clinical Services or Richard M. Kimball, MSN/MPH, APRN, Clinical Research Program Coordinator at 410-955-8511.
Basic Science and Pharmaceutical Research
Hopkins’ sponsored basic science and pharmaceutical research is focused on how to cure ALS by repairing the damage to motor neuron cells or by preventing it altogether. This center ranks among the world’s best because it is carried out under a unique blueprint that has taken shape as the Robert Packard Center for ALS Research at Johns Hopkins. The Packard Center is the only institution of its kind dedicated solely to this disease. Over 100 scientists, other universities, government laboratories, and biotech companies work together, sharing insights and materials to understand the causes and cure of ALS. The Center’s scientists have helped uncover new genes for familial ALS, research nerve repair, worked actively on genetic risk factors, developed a variety of animal models for testing therapies, explored ALS biology, advanced stem cell therapy, and researched ways to counter muscle atrophy.
Center scientists have screened new drugs and are ushering them from lab bench to clinical trials. The first five years have seen more than a dozen clinical trials for these candidate drugs and other therapies. Finally, Packard Center scientists have become world respected in increasing understanding of the biology of ALS. This understanding along with the Center’s drug discovery program, helps extend the insight and treatment possibilities for other neurodegenerative diseases including Parkinson’s Disease, Alzheimer’s Disease, spinocerebellar ataxia, Huntington’s Disease, Multiple Sclerosis, and peripheral neuropathies.
Information about other ALS-specific research trials can be found on these websites:
MUSCULAR DYSTROPHY ASSOCIATION
http://www.mdausa.org/research/ctrials.cfm
ALS ASSOCIATION
http://www.alsa.org/research/drugdev.cfm
NATIONAL INSTITUTES OF HEALTH
http://www.clinicaltrials.gov/
