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Spastic Paraplegia - Centers of Excellence Research Network (SP-CERN)
Sponsor: Boston Children's Hospital
Collaborators:
- Massachusetts General Hospital
- Columbia University
- University of Miami
- University of Michigan
- Baylor College of Medicine
- University of Texas Southwestern Medical Center
- University of Washington
- Children's Hospital Medical Center, Cincinnati
- Seattle Children's Hospital
- University of Iowa
Information provided by (Responsible Party): Darius Ebrahimi-Fakhari, Boston Children's Hospital
Brief Summary:
Detailed Description
The hereditary spastic paraplegias (HSPs) include over 80 rare neurogenetic disorders, collectively representing the most prevalent cause of inherited spasticity and related disabilities globally. In all forms of HSP, there is a progressive deterioration of the long axonal tracts, resulting in substantial motor dysfunction and various other symptoms. Primary lateral sclerosis (PLS) is a related, degenerative neurological disorder characterized by the progressive deterioration of upper motor neurons. Both conditions result in muscle weakness and spasticity, with significant morbidity and impact on quality of life.
The Spastic Paraplegia - Centers of Excellence Research Network (SP-CERN) is a collaborative research consortium dedicated to advancing the understanding, diagnosis, and treatment of hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS). SP-CERN provides a registry and natural history study across the whole age span, a biobank, and a genome archive. This will set the stage for a multitude of opportunities for improved diagnosis and trial readiness. A second objective is to harmonize this effort with similar consortia, especially in Europe, in addition to Asia, South America, and Africa, to help accelerate basic and clinical research on HSP and PLS on a global level. In summary, SP-CERN will support critical research infrastructure for collaborative high-quality research on HSP and PLS in North America and beyond.
General aims include:
A. Establish a shared clinical database, a repository of biospecimen samples, and a central database for the storage of all genetic data in SP-CERN.
B. Synchronize and harmonize collaborations between institutions, clinical sites, and international collaborators through the development of a central research protocol in order to standardize outcome measures and maximize the quality of research and data to ensure clinical trial readiness by regulatory standards.
C. Build comprehensive programs for advancements in diagnosis, provide more opportunities for innovative treatments, and increase access to high-quality healthcare for HSP and PLS patients.
Specific aims for this first pilot study are:
1a. Enrollment of 100 individuals with genetically-confirmed hereditary spastic paraplegia type 4 (SPG4) or hereditary spastic paraplegia type 5A (SPG5A) in the shared clinical database.
1b. Biobanking of blood samples from 100 individuals with SPG4 or SPG5A in a shared biobank.
Click here for clinical trial information
Neuromodulation to Enhance Motor Function in HSP
Sponsor: Rahul Sachdeva
Collaborator: Spastic Paraplegia Foundation
Information provided by (Responsible Party): Principal Investigator:Rahul Sachdeva, PhD,University of Kentucky
Brief Summary:
Hereditary spastic paraplegia (HSP) is a rare neurological condition that causes stiffness, weakness, and difficulty walking due to damage in the nerves that control movement. This study will test whether a noninvasive form of spinal cord stimulation, called transcutaneous spinal cord stimulation (tSCS), can improve walking and reduce muscle stiffness in adults with HSP.
In this study, participants will receive tSCS twice a week for 8 weeks. The stimulation is delivered through self-adhesive electrodes placed on the skin over the lower back and does not require surgery. Each session will last about one hour. After the treatment period, participants will be followed for an additional 8 weeks without stimulation to see whether any improvements are maintained. Researchers will measure walking speed, walking endurance, muscle stiffness, and overall disease severity. Additional tests will explore changes in bladder and bowel function and muscle strength.
Click here for clinical trial information
Hereditary Spastic Paraplegia Genomic Sequencing Initiative (HSPseq)
Sponsor: Boston Children's Hospital
Collaborator: Boston Children's Hospital - Children's Rare Disease Cohorts Initiative
Information provided by (Responsible Party): Darius Ebrahimi-Fakhari, Boston Children's Hospital
Brief Summary:
The purpose of the HSP Sequencing Initiative is to better understand the role of genetics in hereditary spastic paraplegia (HSP) and related disorders. The HSPs are a group of more than 80 inherited neurological diseases that share the common feature of progressive spasticity. Collectively, the HSPs present the most common cause of inherited spasticity and associated disability, with a combined prevalence of 2-5 cases per 100,000 individuals worldwide.
In childhood-onset forms, initial symptoms are often non-specific and many children may not receive a diagnosis until progressive features are recognized, often leading to a significant diagnostic delay. Genetic testing in children with spastic paraplegia is not yet standard practice. In this study, the investigators hope to identify genetic factors related to HSP. By identifying different genetic factors, the investigators hope that we can develop better treatments for sub-categories of HSP based on cause over time.
Click here for clinical trial information
CAPTURE ALS is looking for patients with ALS, PLS, PMA, and ALS-FTP
Linda Lafontaine - PLS Canadian Study
C-BIG in Montreal conducting a study for ALS called CAPTURE ALS and they are looking for patients with ALS or related neurodegenerative disorders including ALS-Frontotemporal Dementia (ALS-FTD), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA) or asymptomatic individuals. This is a study of ALS and related disorders' biomarkers and PLS is one of these!
There are four recruiting campuses - and they are recruiting NOW:
Edmonton (University of Alberta)
8440 112 St NW, Edmonton, AB, Canada, T6G 2B7Montreal (Montreal Neurological Institute and Hospital – Clinical Research Unit)
3801 University Street, Suite 207, Montreal, QC, Canada, H3A 2B4Toronto (Sunnybrook Health Sciences Centre)
2075 Bayview Ave, U-wing, ground floor, Room UG35, Toronto, ON, Canada, M4N 3M5Québec City (CHU de Québec-Université Laval, Hôpital Enfant-Jésus)
1401, 18e Rue, P-0145, Quebec City, QC, Canada, G1J 1Z4
There are two kinds of participants:
healthy participants - required to travel twice a year
affected participants - required to travel four times a year
INCLUSION CRITERIA
Patients:
-Has ALS or a related neurodegenerative disorder (including ALS-FTD, PLS, and PMA), or asymptomatic individuals with a known ALS mutation.
-Be of the age of majority in their province of residence/treatment
-Have the cognitive capacity to provide informed consent.
-Have proficiency in EN or FR (for study instructions and questionnaires)
Healthy Controls:
-Be between the ages of 40-80 unless age- and sex-matched to an enrolled patient participant (+/- 3 years).
-Have the cognitive capacity to provide informed consent.
-Have proficiency in EN or FR (for study instructions and questionnaires)
EXCLUSION CRITERIA
Patients:
-Ineligible for an MRI due to a pacemaker or other contraindication according to local MRI policies (also being unable to lie flat for an hour due to excessive saliva, etc.)
Healthy Controls:
-A history of a neurological disease including CNS disease (e.g., stroke, head injury, epilepsy) and PNS disease (e.g., neuropathy, myopathy)
-unfortunately, because Hereditary Spastic Paraplegia is a neurological condition it is exclusionary for CAPTURE ALS
-A history of a psychiatric disease (e.g., depression, bipolar disease) that is clinically diagnosed and/or with the current use of psychiatric medications (e.g., antidepressants) for an indication of a psychiatric disease.
-Ineligible for an MRI due to a pacemaker or other contraindication according to local MRI policies
This program is open to INTERNATIONAL participation but travel costs are to be determined on a case by case basis. Normally, $25 per visit is provided for participation. However, if the transportation cost is higher than $25, each site can request for more upon national Principal Investigator’s approval.
More details: Website specific to CAPTURE ALS: CLICK HERE
