Adults with Cerebral Palsy: Define challenge of treating, preventing complication
成人脑瘫患者:定义治疗和预防并发症的挑战
基本信息
- 批准号:7545192
- 负责人:
- 金额:$ 0.6万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2008
- 资助国家:美国
- 起止时间:2008-08-05 至 2009-07-31
- 项目状态:已结题
- 来源:
- 关键词:AcademyAddressAdultAgeAgingAmericanAreaBaclofenBotoxCaringCerebral PalsyChildChildhoodClinicalCollaborationsCommunitiesCommunity PracticeComplicationContinuity of Patient CareDataDegenerative polyarthritisDevelopmentDisabled PersonsEarly InterventionEducationEducational workshopElderlyEnsureExerciseFamilyFatigueFoundationsFractureFundingFutureGeneral PopulationHealthHealth ProfessionalImaging TechniquesImpairmentIncidenceIndividualInvestigationJournalsKnowledgeLeadLifeLife ExpectancyLocomotionLongevityLow Birth Weight InfantMedicalMedicineMetabolic Syndrome XModalityMuscleMuscular AtrophyMusculoskeletalNeurologicNeurologic SymptomsNeurologyNeuronal PlasticityNeurorehabilitationOrthopedic Surgery proceduresOsteoporosisOsteoporosis preventionOsteotomyOutcomePainPaperParentsParticipantPatientsPersonsPhysiciansPopulationPositioning AttributePrevalencePreventionPublishingPumpPurposeReadingRehabilitation therapyResearchRhizotomy procedureRiskRoleScientistSocietiesSpinal cord injury patientsStrokeSupport GroupsSymptomsTechnologyTranslatingUSA GeorgiaWestern Asia Georgiachronic painearly onsetimprovedmultidisciplinaryneuroimagingpreventskillssymposium
项目摘要
DESCRIPTION (provided by applicant): Most individuals with CP are now surviving well into adulthood and are rapidly approaching the longevity of the general population. This heartening advance, however, poses new challenges to the medical community. As they age, these individuals often develop unique musculoskeletal and neurologic symptoms, such as severe pain, fatigue, and a premature decline in mobility and function. At present, little is known about how to manage these symptoms and thereby ensure that the aging CP population leads healthy and productive lives.
The United Cerebral Palsy Research and Educational Foundation (UCPREF), in partnership with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) and Reaching for the Stars, a parent support group for families with a child with cerebral palsy, requests funding a major scientific workshop focused on adults with cerebral palsy. The workshop will take place in Atlanta, Georgia on September 16th and 17th, 2008, prior to the American Academy of Cerebral Palsy and Developmental Medicine's (AACPDM) Annual Conference. The purpose of the proposed workshop is to create a multidisciplinary effort that will explore current efforts to document the incidence and prevalence of cerebral palsy and then explore what is known about the magnitude of the problem of musculoskeletal and neuromuscular complications in adults with CP, reevaluate early interventions in terms of long-term outcomes, and assess the usefulness of cutting-edge technologies in neuro-rehabilitation to treat loss of mobility and functionality during middle and later life. Workshop participants will approach these issues from the standpoint of best care, continuity of care, and prevention of pain and early loss in function. The workshop will bring together leading scientists, physicians, healthcare professionals, families and individuals living with cerebral palsy to review current knowledge and develop a blueprint for future research and collaboration in the area of aging and rehabilitation in cerebral palsy.
Society needs to address the issue of aging adults with CP from a standpoint of best care, continuity of care, and prevention of early loss in function as adults with CP are a growing population due to improved survival of low birth weight infants and concomitant increasing longevity. This workshop will create an interdisciplinary effort that clearly outlines the magnitude of the problem, the impact of early interventions on long-term health outcomes, the potential of new noninvasive imaging techniques and of neuro-rehabilitation modalities. At the end of the conference, a document will be generated outlining common conventional practice, the data informing such practice, knowledge gaps that beg further investigation, and a position paper with the next steps necessary for the community impacted by CP.
描述(由申请人提供):大多数患有CP的个体现在都能很好地存活到成年期,并迅速接近一般人群的寿命。然而,这一令人振奋的进展给医学界带来了新的挑战。随着年龄的增长,这些人往往会出现独特的肌肉骨骼和神经症状,如剧烈疼痛,疲劳,以及运动和功能的过早下降。目前,人们对如何控制这些症状并从而确保老年CP人群过上健康和富有成效的生活知之甚少。
联合脑瘫研究和教育基金会(UCPREF)与美国脑瘫和发育医学学会(AACPDM)和Reaching for the Stars合作,这是一个为脑瘫儿童家庭提供家长支持的团体,要求资助一个主要的科学研讨会,重点关注脑瘫成人。研讨会将于2008年9月16日和17日在格鲁吉亚亚特兰大举行,在美国脑瘫和发育医学学会(AACPDM)年会之前举行。拟议的研讨会的目的是创建一个多学科的努力,将探讨目前的努力,以记录脑瘫的发病率和患病率,然后探讨什么是已知的问题的严重程度的肌肉骨骼和神经肌肉并发症的成年人与CP,重新评估早期干预措施的长期结果,并评估尖端技术在神经康复治疗中的有用性,以治疗中年和晚年的活动能力和功能丧失。研讨会的参与者将从最佳护理、护理的连续性、预防疼痛和早期功能丧失的角度来处理这些问题。该研讨会将汇集领先的科学家,医生,医疗保健专业人员,脑瘫患者家庭和个人,以审查当前的知识,并为未来在脑瘫老化和康复领域的研究和合作制定蓝图。
社会需要从最佳护理、护理连续性和预防早期功能丧失的角度来解决老年CP患者的问题,因为由于低出生体重儿的存活率提高和伴随的寿命延长,成年CP患者的人口正在增长。本次研讨会将创建一个跨学科的努力,清楚地概述了问题的严重性,早期干预对长期健康结果的影响,新的非侵入性成像技术和神经康复模式的潜力。在会议结束时,将生成一份文件,概述常见的常规做法,为这种做法提供信息的数据,需要进一步调查的知识差距,以及受CP影响的社区所需的后续步骤的立场文件。
项目成果
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