Resources to Assist Investigations in Primary Immunodeficiency Diseases (U24)

协助原发性免疫缺陷疾病调查的资源 (U24)

• 批准号: 9460354
• 负责人: CHARLOTTE CUNNINGHAM-RUNDLES
• 金额: $ 69.77万
• 依托单位: IMMUNE DEFICIENCY FOUNDATION
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-04-01 至 2020-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9460354
• 关键词: Affect; Autoimmune Process; Award; Blood; Categories; Cell Line; Cells; Clinical; Collaborations; Communities; Consent; Contracts; DNA; Data; Data Collection; Defect; Deficiency Diseases; Diagnosis; Disease; Educational Materials; Enrollment; Etiology; Fostering; Foundations; Funding; Funding Opportunities; Genes; Goals; Grant; Human; Immune; Immune System Diseases; Immune system; Immunologic Deficiency Syndromes; Immunologics; Individual; Infant; Inflammatory; Information Dissemination; Investigation; Laboratories; Link; Marrow; Mission; National Institute of Allergy and Infectious Disease; Neonatal Screening; Observational Study; Online Systems; Pathway interactions; Patient Participation; Patient-Focused Outcomes; Patients; Physicians; Quality of life; Registries; Research; Research Institute; Research Personnel; Resources; Scientist; Secure; Severe Combined Immunodeficiency; T-Lymphocyte; Training; Transplantation; U-Series Cooperative Agreements; United States; United States National Institutes of Health; Work; career; congenital immunodeficiency; data sharing; design; education access; experience; gene therapy; improved; innovation; international center; programs; public health relevance; recruit; repository; response; training opportunity

 DESCRIPTION (provided by applicant): The field of Primary Immune Deficiency Diseases PIDD continues to grow rapidly, with recognition of over 200 different disease-associated genes. To keep pace with these discoveries, the NIH has supported a number of mechanisms to accelerate and expand PIDD research, funding individual grants, contracts, and cooperative agreements. The NIAID has recognized that a number of additional resources are required to advance this work, including data collection, physician education, and access to rare resources and first proposed an RFA for this work in 2003. To answer this need, a group of experienced PIDD investigators formed the U. S. Immunodeficiency Network (USIDNET), in collaboration with the Immune Deficiency Foundation (IDF). This group was awarded the first contract, (2003-2010) and subsequently, as a competitive continuation the USIDNET was awarded a cooperative agreement for this work, receiving funds for 2010-2015. The present application is for the continuation of this work, under RFA-AI-13-054, "Resources to Assist Investigations in Primary Immunodeficiency Diseases". To continue and accelerate this momentum, the USIDNET investigators propose to carry forward this initiative, with innovative plans to extend and accelerate this work. The goals of USIDNET are to maintain, improve and extend the needed PIDD resources, including (1) Extend the scope, enrollment and utilization of the secure, web-based, consented USIDNET Registry of individuals with all forms of PIDD, to collect longitudinal data, develop additional PIDD-specific forms, support observational studies, stimulate research collaborations, engage the patient community directly and further define patient outcomes using Quality of Life indicators; (2) Maintain and expand a repository of cells and DNA to aid in the research of PIDD and find ways to make accessible other rare materials and (3) Provide intensive training and educational opportunities for dissemination of information about these diseases, and encourage collaborative PIDD research at all levels.