International SMA Patient Registry

This study is currently recruiting participants. (see Contacts and Locations)
Verified April 2013 by Indiana University
Sponsor:
Collaborator:
Families of Spinal Muscular Atrophy
Information provided by (Responsible Party):
Indiana University ( Indiana University School of Medicine )
ClinicalTrials.gov Identifier:
NCT00466349
First received: April 24, 2007
Last updated: April 2, 2013
Last verified: April 2013
  Purpose

This is a registry of individuals affected by Spinal Muscular Atrophy (SMA). The purpose of the registry is to allow researchers studying the biological basis of SMA and potential therapies in SMA access to individuals interested in participating in research and/or experimental therapies. The International SMA Patient Registry is supported by Families of SMA.


Condition
Muscular Atrophy, Spinal

Study Type: Observational
Study Design: Observational Model: Family-Based
Official Title: International Spinal Muscular Atrophy Patient Registry

Resource links provided by NLM:


Further study details as provided by Indiana University:

Estimated Enrollment: 3000
Study Start Date: May 1986
  Eligibility

Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population

Individuals or family members of individuals who have been diagnosed with SMA.

Criteria

Inclusion Criteria:

  • Individuals or family members of individuals who have been diagnosed with SMA.
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00466349

Contacts
Contact: Claire Wegel (317) 278-6158 smareg@iupui.edu
Contact: Connie Garland (317) 274-5745 smareg@iupui.edu

Locations
United States, Indiana
Indiana University School of Medicine Recruiting
Indianapolis, Indiana, United States, 46202
Contact: Connie Garland    (866) 482-0248 toll free    smareg@iupui.edu   
Contact: Claire Wegel, MPH    (317) 278-6158    cwegel@iupui.edu   
Sponsors and Collaborators
Indiana University School of Medicine
Families of Spinal Muscular Atrophy
Investigators
Principal Investigator: Tatiana Foroud, PhD Indiana University School of Medicine
  More Information

Additional Information:
No publications provided

Responsible Party: Indiana University ( Indiana University School of Medicine )
ClinicalTrials.gov Identifier: NCT00466349     History of Changes
Other Study ID Numbers: 0202-03
Study First Received: April 24, 2007
Last Updated: April 2, 2013
Health Authority: United States: Institutional Review Board

Keywords provided by Indiana University:
SMA Type I
SMA Type II
SMA Type III
SMN
Werdnig-Hoffman Disease
Spinal Muscular Atrophy
Registry
SMA Type IV

Additional relevant MeSH terms:
Muscular Atrophy, Spinal
Muscular Atrophy
Atrophy
Neuromuscular Manifestations
Neurologic Manifestations
Nervous System Diseases
Pathological Conditions, Anatomical
Signs and Symptoms
Spinal Cord Diseases
Central Nervous System Diseases
Motor Neuron Disease
Neurodegenerative Diseases
Neuromuscular Diseases

ClinicalTrials.gov processed this record on July 31, 2014