Table 3.

Recommendations to Address Biobehavioral Research Needs and Improve HCT Outcomes

Recommendation	Sources and Additional Comments
Ready for action
Promote use of secondary analyses for large cohort datasets	Establish centralized tracking system for locating and accessing data:
	CIBMTR data, eg, as recommended by the CIBMTR Late Effects Task Force
	BMT CTN studies
	Large funded studies from the NIH or others, including merging data with harmonized measures
Establish an HCT research community standard for symptom assessment and PRO	Harmonize measures using common data elements. Recommendation: NIH PROMIS
	Harmonize timing of assessments.
	Extend assessment standards and add validated PRO to larger epidemiologic or clinical trials with longitudinal assessment regardless of targeted endpoints.
	Include patients and caregiver advocates on research teams.
Identify studies with biospecimens and symptom measures	Identify and promote the use of biospecimens that can be assayed in conjunction with patient-reported outcomes or CTCAE measures.
In need of action
Define standard procedures for data collection and storage	Procedures should permit interoperability across collection platforms and databases.
Establish a central repository for biospecimens	Requires agreement on: What samples are collected Methodology of sample collection Sample processing Storage methods Procedures for access.
	Biospecimens should be clinically annotated.
Define a system to store and maintain centralized data	Requires structure for: Funding Research community participation Governance and oversight.

CTCAE indicates Common Terminology Criteria for Adverse Events.