Data Collection


The initiative aims to make data work better for users. We need to collect data on childhood cancer that is useful for a wide variety of users, including clinicians, researchers and patients and their families.


Answer one or more of the following questions in your response:

  • What would we need to do to collect the most informative datasets possible?
    • What data types do we need to consider?
    • What are the minimal molecular and clinical data elements needed for a broadly used dataset?
    • What tissue sources should be considered?
(@jaguillot)

Data Collection

Overall Success Metrics Dashboard

HOW DO WE MEASURE SUCCESS? It seems that we are currently lacking centralized, accurate, high-level progress metrics in childhood cancer. How do we know, year over year, if our countless programs/projects are actually moving the needle? Unless I'm missing something, I believe we need a centralized, easy to read, childhood cancer DASHBOARD, that counts EVERY child diagnosed, and includes very basic but highly accurate... more »

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(@erin.barthel)

Data Collection

Prospective data collection of late effects

I would love to see a way to prospectively collect data on late effects. We have so many new drugs coming out and it would be great to initiate this now so we can start collecting late effect data. So much of our knowledge comes from retrospective research collections. This database could be great way to more accurately learn when these late effects develop and what are patients are at risk for with new drugs.

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(@sfshih)

Data Collection

Multi-level data and longitudinal data collection: identifying the root causes for child cancer

From the prevention perspective, we should collect both family-level and also environmental-level data to help us identify the determinants of child cancers. On the family level, I would suggest that we collect the data from at least three years before the mother's pregnancy to the time of her child being diagnosed as cancers. Environmental-level includes the family social environment for both pregnant women and children... more »

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(@gita.massey)

Data Collection

Molecular/Immunologic cancer predisposition

In this era of molecular studies and immunologic therapies, would like to get a better idea of interaction of both in cancer predisposition and outcome. 1. would include any molecular data on tumor (ie Foundation One, MATCH, institutional) 2. include better family histories (especially first degree relatives - specifically other tumors (benign and malignant), immune problems, hematologic problems 3. include any known... more »

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(@amanda.haddock)

Data Collection

Patient Reported Data

Patients frequently use experimental agents outside a standard treatment or clinical trial, but outcome data is not captured. This presents missed opportunities to capture real world data in the context of a rare disease that could significantly accelerate development of new therapies and combinations and/or support better matching of therapies and prevent complications for other patients. I know there are concerns about... more »

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(@duanyf)

Data Collection

The advantages of patient-derived orthotopic xenograft (PDOX) models for individualized osteosarcoma treatment and drug discover

Osteosarcoma is the most common primary malignant bone tumor which occurs mainly in children and adolescents. Due to rarity, heterogeneity, metastatic potency, and poor response rates to conventional systemic therapy, individualized precision oncology and novel drug discovery in osteosarcoma are warranted. Toward this goal, our laboratory has established the patient-derived orthotopic xenograft (PDOX) model using surgical... more »

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(@sumit.gupta)

Data Collection

Collection of stage and other prognosticators in childhood cancer by population based registries

We know that for both children and adults, cancer outcomes on clinical trials are not the same as real world outcomes. Population-based cancer registries allow us to compare outcomes between jurisdictions, sub populations, and over time. This allows us to identify populations whose outcomes are lagging behind and identify targets for interventions. These comparisons however are hampered by the fact that registries rarely... more »

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(@john.bergsagel)

Data Collection

We need CancerLINQ for pediatric oncology

We need a CancerLINQ for pediatric oncology! CancerLINQ, a subsidiary of the American Society of Clinical Oncology, is a database of individual patient data from over 100 practices of patients who are NOT enrolled in clinical trials. It represents real-world patient journeys. "CancerLinQ Discovery®️ enables the oncology community to translate big data from CancerLinQ®️'s pool of de-identified data... more »

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(@rwnoskcaj)

Data Collection

Global Database on Childhood Cancer Patients Infected with Human Immunodeficiency Virus (HIV).

There is a pressing need for a large international database on childhood and adolescent cancer patients who are also infected with the Human Immunodeficiency Virus (HIV). I believe that existing data is too fragmented and scattered to be readily useful for some types of research. The data for this proposed database would be obtained from hospitals and research facilities, not just from this country, but from other... more »

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Data Collection

Need to collect comprehensive data on pediatric patients with hematologic cancers

In addition to collecting genomic data on such patients, the following types of datasets and samples would be quite informative in disease diagnosis, therapy development, and treatment of pediatric patients with hematologic cancers: • Proteomic data with clinical correlation • Safety and toxicity data profiles at different time points • Treatment regimen • Outcomes data • Socioeconomic and demographic data • Biospecimens... more »

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Data Collection

Commitment to depositing data from curation efforts to a common repository

The American Society of Hematology is also committed to the understanding of inherited genomic profiles that predispose individuals to hematologic malignancies. As such, the Society has partnered with the Clinical Genome Resource to curate variants in genes (such as RUNX1 and GATA2) that are involved in predisposition to myeloid malignancies. Predisposition syndromes often manifest in children or young adults. Data collection... more »

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(@ljmillet)

Data Collection

Collect data on the duration of hospital stays

The financial toxicity of pediatric cancers is real, not only to individuals, but also to the insurance system and society. For example, 800 neuroblastoma patients in the US are a $1.5 Billion industry, not including relapse, life-long complications, and complex outcomes (e.g. secondary cancers). A goal of new CCDI products should seek to improve outcomes at reduces costs. Collecting hospitalization and duration data... more »

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(@jaguillot)

Data Collection

Misc.

- Create a central performance dashboard/scorecard for childhood cancer (across all patients) that clearly/easily shows if we are making improvements in decreasing new diagnoses, relapse rates, significant late effects, survival, etc. We are dumping millions of dollars and man-hours into improving outcomes...are we really moving the needle? - Create a centralized patient data registry that includes a myriad of useful... more »

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(@farahank)

Data Collection

Leveraging wearable technologies to enhance pediatric cancer treatment profiles

Patient-reported outcomes (PROs) offer additional insight into a patient's daily activity and have been shown to have a prognostic and therapeutic value. However, as with all self-reported outcomes, many PROs are associated with response and recall biases. Given the prognostic importance of performance status and PROs in addition to their impact on treatment decisions, there is a need for feasible, real-time, objective... more »

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