Monday, February 16, 2026 2/16/2026

Using Information Technology to Improve Outcomes for Children Living with Cancer

Award Number: U01CA246612
ORGANIZATION: NATIONAL CANCER INSTITUTE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/20/2019
PERIOD OF PERFORMANCE END DATE: 12/31/2025

Group Awards By:

View Award Description

Using Information Technology to Improve Outcomes for Children Living with Cancer - This application plans to develop a program, Symptom Monitoring & Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS), to enable timely mitigation and management of unrelieved symptoms for children with cancer. The SyMon-SAYS will administer, score, interpret and display the results of symptom assessments in “real-time” between clinic visits in cancer care ambulatory settings, when patients are likely to be more symptomatic. We hypothesize that this system can facilitate prompt identification of problematic symptoms; consequently, with the availability of graphical symptom reports over time, timely providers’ clinical care, and an informative symptom management booklet, patients will become informed about their condition and take an active role in treatment, which will further improve self-management skills. Better self-management promotes adherence to treatment plans, builds individual capacity, improves interaction between patients and caregivers, reduces the use of medical specialists, and optimizes clinical outcomes across the lifespan throughout the treatment and disease continua. The proposed waitlist control randomized trial is based on our preliminary study testing the feasibility of the patient-centered SyMon-SAYS in a pediatric oncology clinic. Results showed that the SyMon-SAYS was acceptable to patients/parents and they were willing to use it during their routine clinical care. Clinicians expressed interest in receiving reports yet preferred to review them in the medical record. Based on what we learned from this pilot, we now propose to integrate the SyMon-SAYS system into the electronic health record (EHR), to streamline the alert notification with clinician workflow by using EHR (Epic) messaging, and to include a broader range of symptoms. Patients and parents will complete the weekly symptom assessment and review the symptom report by logging into the Epic MyChart patient portal. Instead of using a standalone SyMon-SAYS app, we will align the SyMon-SAYS program with the Epic EHR. We plan to conduct a single institution modified waitlist control randomized trial of 200 children (ages 8-17) with cancer over 16 weeks (Group A: 16-week SyMon-SAYS intervention; Group B: 8-week usual care and then 8-week SyMon-SAYS intervention) to achieve the following specific aims: 1) evaluate effectiveness of SyMon-SAYS at week-8 and its maintenance effects at week-16. We hypothesize that Group A (versus Group B) will report decreased parent-perceived barriers to managing their children’s symptoms, decreased patient symptom burden, increased patient and parent self-efficacy, and ultimately increased patient HRQOL at week-8 and no significant differences between Groups A & B at week-16; 2) evaluate influential factors to Aim 1, including contextual patient and parent factors, adherence to the SyMon- SAYS intervention, and symptom communication; and 3) evaluate predictors of adherence to the SyMon-SAYS intervention and preference of SyMon-SAYS versus usual care.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2024 ( Subtotal = $623,527 )
2024	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	003	5	8/1/2024	NON-COMPETING CONTINUATION	$321,782
2024	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	002	5	12/15/2023	NON-COMPETING CONTINUATION	$62,352
2024	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	004	5	9/23/2024	NON-COMPETING CONTINUATION	$0
2024	2024	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	001	5	12/7/2023	NON-COMPETING CONTINUATION	$239,393
2024	2022	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	000	4	10/11/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $623,527

Issue Date FY: 2023 ( Subtotal = $0 )
2023	2022	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	000	4	6/29/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $519,764 )
2022	2022	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	000	4	9/1/2022	NON-COMPETING CONTINUATION	$519,764
														Subtotal = $519,764

Issue Date FY: 2021 ( Subtotal = $484,876 )
2021	2021	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	001	3	8/24/2021	NON-COMPETING CONTINUATION	$484,876
2021	2020	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	000	2	4/28/2021	NON-COMPETING CONTINUATION	$0
														Subtotal = $484,876

Issue Date FY: 2020 ( Subtotal = $489,339 )
2020	2020	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	Cancer Cause and Prevention Research	000	2	8/26/2020	NON-COMPETING CONTINUATION	$489,339
														Subtotal = $489,339

Issue Date FY: 2019 ( Subtotal = $517,035 )
2019	2019	NORTHWESTERN UNIVERSITY	633 CLARK ST	EVANSTON	IL	60208	COOK	USA	21st Century Cures Act - Beau Biden Cancer Moonshot	000	1	9/18/2019	NEW	$517,035
														Subtotal = $517,035

Grand Total All Awards = $2,634,541

Top

All Categories

About

Search

Reports

Data Submission

Award Information

Using Information Technology to Improve Outcomes for Children Living with Cancer

Award Number: U01CA246612

ORGANIZATION: NATIONAL CANCER INSTITUTE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 09/20/2019

PERIOD OF PERFORMANCE END DATE: 12/31/2025

Federal Websites

Department of Health & Human Services

HHS Operating Divisions

HHS Staff Divisions

Download A Document Viewer