Comment Period Extended to 3/23/2015 for Notice of Proposed Rulemaking (NPRM) for FDAAA 801 and NIH Draft Reporting Policy for NIH-Funded Trials
Trial record 12 of 13 for:    "spinal muscular atrophy with respiratory distress" OR "Infantile Spinal Muscular Atrophy" OR "Spinal Muscular Atrophies of Childhood"

International SMA Patient Registry

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

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.

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

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.


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 identifier: NCT00466349

Contact: Claire Wegel (317) 278-6158
Contact: Connie Garland (317) 274-5745

United States, Indiana
Indiana University School of Medicine Recruiting
Indianapolis, Indiana, United States, 46202
Contact: Connie Garland    (866) 482-0248 toll free   
Contact: Claire Wegel, MPH    (317) 278-6158   
Sponsors and Collaborators
Indiana University School of Medicine
Families of Spinal Muscular Atrophy
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 ) 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
Werdnig-Hoffman Disease
Spinal Muscular Atrophy

Additional relevant MeSH terms:
Muscular Atrophy
Muscular Atrophy, Spinal
Central Nervous System Diseases
Motor Neuron Disease
Nervous System Diseases
Neurodegenerative Diseases
Neurologic Manifestations
Neuromuscular Diseases
Neuromuscular Manifestations
Pathological Conditions, Anatomical
Signs and Symptoms
Spinal Cord Diseases processed this record on February 27, 2015