RECRUITING

Spastic Paraplegia - Centers of Excellence Research Network

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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). Aims of the consortium are to a) perform natural history studies of HSP subtypes, b) discover and validate biomarkers and clinician- and patient-reported outcome measures, c) uncover HSP's molecular pathophysiology and develop rational therapeutic targets, and d) perform sufficiently powered clinical trials. The current pilot study is aimed at enrolling 100 individuals with hereditary spastic paraplegia type 4 (SPG4) or hereditary spastic paraplegia type 5A (SPG5A).

Official Title

Spastic Paraplegia - Centers of Excellence Research Network (SP-CERN) - Natural History Study Pilot

Quick Facts

Study Start:2024-06-04
Study Completion:2027-06-04
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06553976

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Male or female patients of all ages with a clinical and molecular diagnosis of hereditary spastic paraplegia type 4 (SPG4, SPAST) or hereditary spastic paraplegia type 5A (SPG5A, CYP7B1).
  1. * Not having such a diagnosis and/or not being related to such individual.

Contacts and Locations

Study Contact

Darius Ebrahimi-Fakhari, MD, PhD.
CONTACT
617-355-0097
hsp.research@childrens.harvard.edu
Nicole Battaglia, BS.
CONTACT
617-919-7450
hsp.research@childrens.harvard.edu

Study Locations (Sites)

University of Miami Miller School of Medicine
Miami, Florida, 33136
United States
University of Iowa Carver College of Medicine
Iowa City, Iowa, 52242
United States
Boston Children's Hospital
Boston, Massachusetts, 02215
United States
Massachusetts General Hospital
Boston, Massachusetts, 02215
United States
University of Michigan School of Medicine
Ann Arbor, Michigan, 48109
United States
Columbia University - Irving Medical Center
New York, New York, 10032
United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, 45229-3039
United States
Scottish Rite for Children
Dallas, Texas, 75219
United States
Texas Children's Hospital
Houston, Texas, 77035
United States
Seattle Children's Hospital
Seattle, Washington, 98105
United States
University of Washington School of Medicine
Seattle, Washington, 98195
United States

Collaborators and Investigators

Sponsor: Boston Children's Hospital

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-06-04
Study Completion Date2027-06-04

Study Record Updates

Study Start Date2024-06-04
Study Completion Date2027-06-04

Terms related to this study

Additional Relevant MeSH Terms

  • Hereditary Spastic Paraplegia
  • Primary Lateral Sclerosis
  • SPG4
  • SPG5A
  • Spastic Paraplegia 4
  • Spastic Paraplegia 5A
  • Early Onset Hereditary Spastic Paraplegia
  • Neuromuscular Diseases
  • Spastic Paraplegia, Hereditary