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D., Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), served as Acting Chair in place of Dr.
MDCC members were particularly interested in the new IDe A States program because it might enable individuals and families who reside in rural areas to participate more readily in clinical research. Nuckolls presented an update on the 2015 Action Plan for the Muscular Dystrophies, a document that provides an outline of the priority needs for improving treatments and reducing the impact of all types of muscular dystrophies.
This will allow them to determine the biomarkers’ ability to track disease progression.
The five biomarkers are among more than 140 proteins that a number of studies have identified as associated with either Alzheimer’s or other central nervous system diseases.
They will include Alzheimer’s patients, people with mild cognitive impairment, and healthy controls.
Researchers will compare changes in biomarker concentration images with changes in patients’ symptoms.
There was wide-spread support for developing a system to collect data and report on MDCC member investments on the five Action Plan priorities and for monitoring the growth and stability of the research workforce.
The feasibility of collecting and reporting this data for each of the MDCC members was discussed, with many members reporting they already have systems in place to accomplish similar tasks.
Analysis of information provided by MDCC members revealed that almost all of the 81 objectives and goals of the Action Plan fall within the mission of one or more member agency or organization, and there are many opportunities for collaboration. Nuckolls presented a plan to collect information from MDCC members regarding their agencies’/organizations’ support for efforts according to five Action Plan priorities that summarize the 81 objectives and goals.
The need to better communicate the activities of the MDCC to the wider muscular dystrophy community was also discussed and a tentative plan to develop a communications subcommittee of the MDCC was introduced. Sharon Hesterlee, Chief Science Officer, Myotonic Dystrophy Foundation (MDF), provided an overview of a recent meeting on “Myotonic Dystrophy Patient-Centered Therapy Development” held in September 2015 in Arlington, Virginia.
After providing a brief introduction to myotonic dystrophy and the MDF, Dr.
The goal is to improve monitoring and treatment of cognitive impairment conditions.
Lack of tools for determining early diagnosis and disease progression is a major challenge in the development of Alzheimer’s drugs.
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This data would be collected and reviewed annually to track efforts addressing the Action Plan as well as to monitor the muscular dystrophy workforce.