ALS Clinic at the Penn Medicine Neuroscience Center
Research
 
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The ALS Center at the Penn Comprehensive Neuroscience Center is actively involved in research projects related to symptom management, novel therapeutics, imaging and genetics of ALS.

The following studies are all actively recruiting participants:

Clinical Trial of Ceftriaxone in Subjects with ALS

  • Purpose: to determine if ceftriaxone will slow disease course in patients with ALS.
  • Phase III trial of 600 patients with ALS across the U.S. and Canada.
  • Patients must have a central line placed, as either ceftriaxone or placebo is administered intravenously. Extensive catheter care teaching is conducted by the research nurse.
  • Participation in the study is expected to last approximately 1 to 3 years.
  • Goal: 10 participants.

Gastrostomy Tube Study

  • Purpose: to explore the factors/issues that affect patient/caregivers’ decisions regarding feeding tube placement.
  • Patients considering feeding tube placement (and their caregivers) take a short, paper/pencil survey before the feeding tube is placed.
  • If a feeding tube is placed, the participants will be asked to complete 2 post-feeding tube placement surveys (1 month and 3-6 months following the tube placement).
  • Goal: 100 participants.

ALS/FTD Program Project Grant (PPG)

  • Purpose: to develop a better understanding of the genetic causes for both ALS and frontotemporal degeneration (FTD).
  • It is hoped that such information will advance the knowledge of what causes this condition and in the future lead to a diagnostic test and treatment for both ALS and frontotemporal degeneration.
  • Study involves one blood sample, possible cerebrospinal fluid sample (only if clinically indicated), brain MRI and neuro-cognitive evaluations.
  • Goal: as many participants as possible.

Empathy in Patients with Amyotrophic Lateral Sclerosis

  • Purpose: to measure empathy in ALS patients.
  • Patients and caregivers are administered paper/pencil surveys that include a series of questions that evaluate a person's ability to see another person's point of view, as well as his/her ability to feel empathic towards another person.
  • Goal: 100 participants.

Visual Function in Amyotrophic Lateral Sclerosis

  • Purpose: to determine the proportion of ALS patients who have abnormal eye movements and eye symptoms, and to examine how these findings relate to other disease symptoms, like trouble thinking or swallowing weakness.
  • All participants are asked to participate in an interview and a videotaped eye movement examination session.
  • Goal: 100 participants.

Riluzole Use in ALS

  • Purpose: to describe financial costs that ALS patients and their families face to obtain supportive care, and to characterize patient and caregiver preferences for riluzole compared to other supportive therapies.
  • All participants are asked to answer a series of questions with his/her social worker and rank their order of preferences among different supportive therapies.
  • Goal: 300 patient and caregiver pairs.

Tissue Donation at the University of Pennsylvania

  • Patients are eligible to enroll in a program for autopsy to be performed at the time of death.
  • In particular, individuals may choose to donate their brain and spinal cord to help further research conducted at the Center for Neurodegenerative Research in collaboration with the Department of Neurology at the University of Pennsylvania.
  • TDP-43 was discovered from previous brain/spinal cord donations.
  • Goal: as many participants as possible.

Anticipated Upcoming Clinical Trials

  • A Multi-Center Controlled Screening Trial of Safety and Efficacy of Rasagiline in Subjects with ALS. This study is based out of the University of Kansas.

If you are interested in learning more about these research opportunities, please contact:

Katelin Hoskins, MSN, MBE, RN
ALS Clinic Nurse Research Coordinator
phone: 215-829-5041
email: katelin.hoskins@uphs.upenn.edu

 


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