Custom Software Solutions
Research IT develops fully integrated custom software solutions to meet your workflow needs. We work with other Stanford teams to provide integrated hosting services either on-premise or on Cloud. Our staff of experienced medical research application software developers have built dozens of special purpose applications for a wide variety of customers, ranging from bereavement support for pediatric oncology to a state-wide program that offers services to newborns considered to be at risk for developmental problems.
While the applications are specific to customer workflows, we use consistent software stack and best practices while making sure that PHI handling requirements at Stanford are met.
Alliance Sleep Questionnaire (ASQ)
The Alliance Sleep Questionnaire (ASQ) is a comprehensive and innovative electronic sleep disorders questionnaire developed by the Academic Alliance for Sleep Research (AASR). The ASQ consists of novel questions and validated measures and uses branching logic to reduce respondent burden. It can be completed on-line from any location with valid log-in information. The ASQ was created as a tool to collect standard clinical information on all patients at the four AASR institutions (Harvard University, University of Pennsylvania, University of Wisconsin-Madison, St Luke's Hospital, and Stanford University) in order to facilitate research (especially in combination with biospecimen collection for genetic and biomarker studies) and to contribute to improved patient care. The questionnaire includes an on-line consent form asking the individual to grant permission to incorporate their de-identified data into the AASR research repository which can be queried by AASR researchers. In the short-term, the ASQ is intended for use by AASR institutions, and in the future other researchers may administer the questionnaire and/or utilize data after receiving approval of submitted data requests. Data has been collected on more than 8,000 individuals and the ASQ is now us used as standard of care on all patients at Stanford Sleep Disorders Clinic and on multiple research studies. The ultimate goal is to have both the ASQ software and access to the research repository accessible free of charge to the sleep community (with appropriate consent procedures providing permission to disclose data back to the parent site of the research study and/or investigators from AASR).
Research IT deployed and locally customized the survey, integrated it with the Epic patient scheduling system, established a mechanism for study coordinators to run reports, and exports anonymized survey data in support of another sleep study, the COMET study.
Related publications include:
- Leary EB, Barger L, Hall-Porter JM, Maislin G, Peppard PE, Rajaratnam SR, Rumble M, Sullivan SS, Walsh JK, Mignot E. Alliance Sleep Questionnaire (ASQ): A Collaborative Online Sleep Assessment Questionnaire. Sleep, June 2012, Vol. 35 (Abstract suppl.), p.A432; #1281.
- Leary EB, Griffin KS, Malunjkar S, Qadri S, Ruoff CM, Sullivan SS, Walsh JK, Mignot E. Alliance Sleep Questionnaire (ASQ) Feasibility Pilot Study. Sleep, June 2012, Vol. 35 (Abstract suppl.), p.A432; #1282.
- Leary EB, Malunjkar S, Qadri S. Ruoff CM, Sullivan SS, Walsh JK, Mignot E. Deployment of the Alliance Sleep Questionnaire (ASQ) at the Stanford Sleep Disorders Clinic (SSDC) as Standard of Care. Sleep, June 2013, Vol. 36 (Abstract suppl.), p. A413, #1209.
- Leary EB, Einen M, Malunjkar S, Ruoff CM, Walsh JK, Mignot E. Validation of the Alliance Sleep Questionnaire (ASQ) Narcolepsy Module in Sleep Disordered Patients. Sleep, June 2014, Vol. 37 (Abstract suppl.) p. A360, #1026.
- Leary EB, Malunjkar S, Ruoff CM, Walsh JK, Mignot E. Validation of the Alliance Sleep Questionnaire (ASQ) Restless Legs Syndrome Module in Sleep Disordered Patients. Sleep, June 2015, Vol. 38 (Abstract suppl.) A432, #1219
- Leary EB, Malunjkar S, Ruoff CM, Cheung J, Schneider L, Walsh JK, Mignot E. Validation of the Alliance Sleep Questionnaire (ASQ) Obstructive Sleep Apnea (OSA) Module in Sleep Disordered Patients. Sleep, June 2016, Vol. 39 (Abstract suppl.) In Press.
Stanford Cancer Institute Research Database (SCIRDB)
In support of the Stanford Cancer Institute Research Database (SCIRDB, previous known as SCCRDB), Research IT engineered a custom data transmission pipeline that transmits clinical data from the clinical data warehouse into a separate database run by the Cancer Institute. The clinical data flowing along this pipeline pertains only to patients seen at the Cancer Institute, in accordance with their IRB.
Data transmitted in this manner consists of not only a broad spectrum of clinical data from both Epic at SHC and Cerner at LPCH, but also research databases hosted in the Research IT data management virtual private database environment, including the Cancer Genetics Research Database and the Pathology Core Tissue Bank.
Pediatric Oncology Bereavement Tracking
While the primary focus of pediatric oncology is to attempt to cure each child diagnosed with cancer, inevitably in some cases the attempt fails and the patient dies. The surviving family members then face a difficult period of bereavement, where they must learn to come to terms with their loved one's death. The Bereavement Tracking application was commissioned in 2004 by Dr. Clare Twist, Associate Professor of Pediatrics (Hematology/Oncology) at the Stanford Children's Hospital. The system facilitates the existing practice of following up with parents of deceased patients in order to offer them ongoing bereavement support.
The application consists of a data entry page to create a record of the patient, associated physicians and caregivers, parental figures, siblings and spouses. Other pages in the application permit locating a specific patient by name or a group of patients by their associated caregiver or the month of their death, in order to support sending out monthly letters of condolence on the anniversary of a patient's death. There is also the ability to manage annual bereavement ceremony dates and venues, and to keep track of which parents attended each ceremony.