神经疾病生物样本交换中心 (BioSEND) 的髓磷脂疾病生物储存库项目 (MDBP)-猫眼课题宝

神经疾病生物样本交换中心 (BioSEND) 的髓磷脂疾病生物储存库项目 (MDBP)

批准号：

10850332

负责人：

FLORIAN S EICHLER

金额：

$14.34万

依托单位：

CHILDREN'S HOSP OF PHILADELPHIA

依托单位国家：

美国

项目类别：

财政年份：

2019

资助国家：

美国

项目状态：

未结题

起止时间：

2019-09-30 至 2025-06-30

来源：

https://reporter.nih.gov/project-details/10850332

关键词：

Academic Medical Centers Adherence Adrenoleukodystrophy Affect Age Alexander Disease Axon Biological Markers Cerebrospinal Fluid Child Clinical Data Clinical Research Clinical Trials Clinical Trials Network Collaborations Collection Communities Data Data Analytics Data Storage and Retrieval Development Disease Electronic Health Record Enrollment Ensure Funding Future Genomic DNA Genomics Genotype Goals Grant Health Hereditary Disease Indiana Individual Infrastructure Link Live Birth Maintenance Metachromatic Leukodystrophy Morbidity - disease rate Myelin National Center for Advancing Translational Sciences National Institute of Neurological Disorders and Stroke Natural History Neuroglia Outcome Outcome Measure Parents Patient Outcomes Assessments Patient advocacy Pediatric Hospitals Pelizaeus-Merzbacher Disease Phenotype Philadelphia Plasma Policies Population Heterogeneity Procedures Production RNA Rare Diseases Recurrence Research Resource Sharing Resources Sampling Serum Severity of illness Shipping Source Symptoms Texas Therapeutic Time Universities Urine Utah Work adjudication biobank biomarker development biomarker validation clinical research site clinical trial readiness data dissemination data management diagnostic biomarker functional outcomes genomic data industry partner interest leukodystrophy member metabolomics molecular targeted therapies monocyte mortality nervous system disorder next generation online resource parent project peripheral blood programs prospective pseudotoxoplasmosis syndrome recruit sample collection screening sex sustainable resource tool transcriptome sequencing

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Summary of the Funded Grant or Project The parent RDCRN program is the Global Leukodystrophy Initiative Clinical Trial Network (GLIA-CTN). This program is in its first cycle (entering Y5) and is a collaboration of 8 US leukodystrophy centers. The primary aims focus on harmonization and curation of leukodystrophy natural history data using standard functional and patient reported outcome measures as well as electronic health records. The parent program supports the collection of clinical data related but does not include the proposed biobanking approaches. This application is expected to create the necessary infrastructure to include BioSEND prospectively in future GLIA-CTN activities.

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