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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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