The St. Jude Lifetime Cohort

NIH Pandemic-Era Grants

Pandemic Era Grants

2024

Document text

Principal Investigator: MELISSA M HUDSON
Organization: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
Fiscal Year: 2024
Award: $1,236,790
Funding agency: National Cancer Institute

Abstract
Because many adverse effects of treatment for childhood cancer may not become clinically apparent until the
survivor attains maturity or older ages, continued follow-up across the lifespan, from childhood through
adulthood, is essential. With the number of childhood cancer survivors in the U.S approaching 500,000, there
is a critical need to accurately characterize the development and manifestation of very late cancer-related
sequelae. In late 2007, St. Jude Children’s Research Hospital initiated a unique clinical (i.e., medically
evaluated) cohort with the primary aim of undertaking lifelong evaluation of health-related and quality of life
outcomes in aging adult survivors of pediatric cancer. Eligibility for participation in the St. Jude Lifetime Cohort
(SJLIFE) was initially defined as survival >10 years from diagnosis, and attained age of >18 years. With the
award of the U01 Cohort Infrastructure grant (U01 CA195547) in July 2015, eligibility for the cohort was
modified to include >5 year survivors. Participation rates for the cohort remain high with 80.4% of the 7152
contacted survivors having been successfully enrolled and an additional 6.8% with expressed interest in
participating but pending an on-campus visit to provide informed consent. As of February 1, 2019, total
enrollment on SJLIFE is 5753 survivors and 629 controls. Accomplishments over the 43 months since award of
the U01 include: 2657 new participants enrolled, implementation of uniform medical assessments with 4096
on-campus clinical evaluations (reflecting performance of 263,165 clinical tests), banking of biospecimens for
94% of new participants (43,240 vials), germline whole genome sequencing of 4422 survivors, 22 active
investigator-initiated funded grants utilizing the cohort, 22 active intervention-based trials, 27 data sharing
collaborations, and 78 manuscripts submitted with 69 published/in press. In this competitive renewal
application we propose to build upon these successes through activities to maintain and enhance the SJLIFE
cohort as a unique and highly productive resource for pediatric cancer survivorship research and to directly: (1)
facilitate an accelerated rate of discovery in survivorship research by establishing an innovative cloud-based
data sharing platform to make clinical and genomic data from the SJLIFE cohort available to the global
research community; (2) facilitate the investigation of genetic contributions to and pathophysiology of
treatment-associated adverse long-term outcomes among survivors of childhood cancer; and, (3) facilitate
establishment of a portfolio of validated risk prediction tools for clinical use in the management of pediatric
cancer patients from the time of diagnosis through survivorship. The SJLIFE cohort will continue to be unique
in its ability to provide new insights into the risks and pathophysiology of morbidity associated with cancer and
its therapy, which is critical to the design of contemporary treatment protocols and public health initiatives to
enable survivor access to preventive and remedial services.

Terms: <21+ years old><65 and older><65 or older><65 years of age and older><65 years of age or more><65 years of age or older><65+ years><65+ years old><> 65 years><Acceleration><Active Follow-up><Address><Adolescent><Adolescent Youth><Adult><Adult Human><Adverse Late Effects><Age><Aged 65 and Over><Aging><Architecture><Auditory system><Award><Biological Markers><Biological Specimen Banks><Biological Substance Banks><Blood><Blood Reticuloendothelial System><Cancer Patient><Cancer Survivorship><Cancers><Cardiovascular><Cardiovascular Body System><Cardiovascular Organ System><Cardiovascular system><Childhood><Childhood Cancer Treatment><Childhood Cancers><Clinical><Clinical Data><Clinical Evaluation><Clinical Testing><Clinical assessments><Cloud Computing><Cloud Infrastructure><Collaborations><Communities><Complex><Data><Data Analytics><Data Bases><Data Set><Data Sources><Databases><Development><Diagnosis><Dysfunction><Eligibility><Eligibility Determination><Endocrine system><Endocrine/Metabolic Organ System><Engineering / Architecture><Enrollment><Environment><Evaluation><Functional disorder><Funding><Future><Genetic><Genital system><Genomics><Germ Lines><Grant><Health behavior><Heart Vascular><Hormonal System><IQ Deficit><Iatrogenic Cancer><Individual><Informed Consent><Infrastructure><Institution><Intervention><Intervention Strategies><Intuition><Investigation><Investigators><Late Effects><Long-Term Effects><Long-Term Survivors><Longterm Effects><Malignant Childhood Neoplasm><Malignant Childhood Tumor><Malignant Neoplasms><Malignant Pediatric Neoplasm><Malignant Pediatric Tumor><Malignant Tumor><Malignant childhood cancer><Manuscripts><Measures><Medial><Medical><Metabolic/Endocrine Body System><Monitor><Morbidity><Morbidity - disease rate><NGS Method><NGS data><NGS system><Neoplasms><Neurocognitive Deficit><Outcome><Participant><Patient Self-Report><Patients><Pediatric Cancer Treatment><Pediatric cohort><Peer Review><Performance><Phenotype><Physiologic><Physiological><Physiopathology><Population><Predicting Risk><Preventive><Productivity><Protocol Screening><Public Health><Publishing><Pulmonary Body System><Pulmonary Organ System><Reproductive system><Research><Research Personnel><Research Resources><Researchers><Resources><Respiratory System><Respiratory Tracts><Respiratory tract structure><Risk><Risk Estimate><Role><Saint Jude><Saint Jude Children's Cancer Center><Saint Jude Children's Research Hospital><Sampling><Secure><Self-Report><Services><Source><St. Jude><St. Jude Children's Cancer Center><St. Jude Children's Research Hospital><St. Jude Children's Research Hospital Comprehensive Cancer Center><St.Jude Children's Cancer Center><St.Jude Children's Research Hospital><St.Jude Children's Research Hospital Comprehensive Cancer Center><Survivors><Testing><Therapy Related Malignant Neoplasm><Therapy Related Malignant Tumor><Therapy-Associated Cancers><Therapy-Related Cancer><Time><Treatment Protocols><Treatment Regimen><Treatment Schedule><Treatment-Associated Cancer><Treatment-Related Cancer><Treatment-related toxicity><Urine><Validation><Vial><Vial device><Visit><Visualization><Visualization software><above age 65><active followup><adulthood><adverse consequence><adverse outcome><after age 65><age 65 and greater><age 65 and older><age 65 or older><age > 65><age of 65 years onward><aged 65 and greater><aged 65+><aged ≥65><ages><bio-markers><biobank><biologic marker><biological specimen repository><biomarker><biorepository><biosample repository><biospecimen bank><biospecimen repository><cancer diagnosis><cancer in a child><cancer in children><child with cancer><childhood cancer survivor><childhood malignancy><circulatory system><clinical applicability><clinical application><clinical predictive model><clinical test><cloud based><cloud based computing><cloud computer><co-morbid><co-morbidity><cohort><comorbidity><computer based prediction><data base><data infrastructure><data registry><data sharing><demographics><depository><design><designing><developmental><endocrine gland/system><enroll><entire genome><exome><exome sequencing><exome-seq><exomes><experience><field based data><field learning><field study><field test><flexibility><flexible><follow up><follow-up><followed up><followup><forecasting risk><full genome><genome sequencing><genomic data><genomic data-set><genomic dataset><handheld mobile device><health assessment><health related behavior><health related quality of life><high risk><high risk group><high risk individual><high risk people><high risk population><human old age (65+)><innovate><innovation><innovative><insight><intelligence quotient deficit><interest><interoperability><interventional strategy><intuitive><juvenile><juvenile human><life span><lifespan><longterm survivors><m-Health><mHealth><malignancy><mobile device><mobile health><neoplasia><neoplasm/cancer><neoplastic growth><neurocognitive decline><neurocognitive impairment><next gen sequencing><next generation sequence data><next generation sequencing><nextgen sequencing><old age><over 65 years><participant enrollment><pathophysiology><patient enrollment><pediatric><pediatric cancer><pediatric cancer survivor><pediatric malignancy><predict risk><predict risks><predicted risk><predicted risks><predicting risks><predictive modeling><predictive risk><predictive tools><predicts risk><prospective><repository><research clinical testing><risk prediction><risk prediction algorithm><risk prediction model><risk predictions><sensor><shareable platform><shared data base><shared database><sharing platform><social role><socio-demographics><sociodemographics><specimen bank><specimen repository><success><survivorship><therapeutic toxicity><therapy adverse effect><therapy associated toxicity><therapy related toxicity><therapy toxicity><treatment adverse effect><treatment toxicity><treatment-associated toxicity><validations><visualization tool><whole genome><≥65 years>