NINDS Common Data Elements for Congenital Muscular Dystrophy Clinical Research: A National Institute for Neurological Disorders and Stroke Project

Journal of Neuromuscular Diseases
Michael W LawlorCMD Working Group

Abstract

A Congenital Muscular Dystrophy (CMD) Working Group (WG) consisting of international experts reviewed common data elements (CDEs) previously developed for other neuromuscular diseases (NMDs) and made recommendations for all types of studies on CMD. To develop a comprehensive set of CDEs, data definitions, case report forms and guidelines for use in CMD clinical research to facilitate interoperability of data collection, as part of the CDE project at the National Institute of Neurological Disorders and Stroke (NINDS). One working group composed of ten experts reviewed existing NINDS CDEs and outcome measures, evaluated the need for new elements, and provided recommendations for CMD clinical research. The recommendations were compiled, internally reviewed by the CMD working group, and posted online for external public comment. The CMD working group and the NIH CDE team reviewed the final version before release. The NINDS CMD CDEs and supporting documents are publicly available on the NINDS CDE website (https://www.commondataelements.ninds.nih.gov/CMD.aspx#tab=Data_Standards). Content areas include demographics, social status, health history, physical examination, diagnostic tests, and guidelines for a variety of specific outcomes...Continue Reading

References

Mar 31, 2009·Arquivos de neuro-psiquiatria·Umbertina Conti Reed
Jun 24, 2009·Arquivos de neuro-psiquiatria·Umbertina Conti Reed
Jul 1, 2009·Neurology·A NadeauF Muntoni
Mar 10, 2010·Neuromuscular Disorders : NMD·Valérie AllamandUNKNOWN Consortium for Collagen VI-Related Myopathies
Nov 4, 2010·Archives of Physical Medicine and Rehabilitation·Veronica A ThurmondKaren Schwab
Nov 4, 2010·Archives of Physical Medicine and Rehabilitation·Ann-Christine DuhaimeUNKNOWN Common Data Elements Neuroimaging Working Group Members, Pediatric Working Group Members
Nov 4, 2010·Archives of Physical Medicine and Rehabilitation·Geoffrey T ManleyRonald L Hayes
Nov 4, 2010·Archives of Physical Medicine and Rehabilitation·Danny G KaloupekFarris Tuma
Nov 4, 2010·Archives of Physical Medicine and Rehabilitation·John WhyteGeoffrey T Manley
Apr 19, 2011·Handbook of Clinical Neurology·Susan E Sparks, Diana M Escolar
Jun 7, 2011·Neuromuscular Disorders : NMD·C G BönnemannUNKNOWN CMD Outcomes Consortium
Sep 24, 2011·Journal of Neurotrauma·P David AdelsonUNKNOWN Pediatric TBI Demographics and Clinical Assessment Working Group
Nov 19, 2011·Journal of Neurotrauma·A Cate MillerRamona Hicks
Nov 24, 2011·Journal of Neurotrauma·Rachel P BergerUNKNOWN Pediatric TBI CDE Biospecimens and Biomarkers Workgroup
Mar 1, 2012·Clinical Trials : Journal of the Society for Clinical Trials·Stacie T GrinnonSelma Kunitz
Mar 13, 2012·Topics in Spinal Cord Injury Rehabilitation·Fin Biering-SørensenJoanne Odenkirchen
Jul 2, 2015·Archives of Pathology & Laboratory Medicine·Jahannaz DastgirMichael W Lawlor

❮ Previous
Next ❯

Citations

Sep 16, 2019·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Cindy HuntAndrew Baker
Apr 6, 2019·Journal of Speech, Language, and Hearing Research : JSLHR·Matthew L CohenFrederick P Rivara
May 18, 2020·Clinical Medicine : Journal of the Royal College of Physicians of London·Linpei Jia, Hongliang Zhang

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.