We hope to expand this section as more tools become available, incorporating outcome sets, document sharing, and other tools for efficient research.
Core Outcome Set for Acute Respiratory Failure
This NHLBI-funded R24 infrastructure project recently published the core set of outcome measures recommended for use in in all clinical research evaluating acute respiratory failure survivors after hospital discharge (LINK).
Additionally, this project has completed the development of many FREE resources for researchers conducting long-term follow-up of patients.
1. A database of common surveys and tests for evaluating physical, cognitive, mental health, and quality of life outcomes (LINK);
2. Adaptable tools, templates, and manuals to reduce loss to follow-up of research participants, including an interactive searchable database of >600 retention strategies (LINK); and
3. A standalone statistical application to address “truncation due to death” (i.e. death as a competing event) when evaluating functional outcomes (LINK).
For additional information, please contact Dr. Dale Needham at improveLTO@jhmi.edu.
SPRINT-SARI (Short Period Incidence Study of Severe Acute Respiratory Infection) has created open-access CRFs and consent forms for collection of observational data on critically ill patients with SARI. Please see www.sprintsari.org for research tools