Research & Studies
Inspire Research Portal
Great toolkits, trainings, and resources for patient and family advocates/leaders working on advisory councils and participating on research teams…it is an “online library of resources designed for patients and researchers partnering on patient-centered outcomes research (PCOR), healthcare studies that actively engage patients in the research process from start to finish. The purpose is to provide easy access to existing tools and resources for this research community.”
Natural History Registry for Necrotizing Enterocolitis
The Natural History Registry for Necrotizing Enterocolitis (NEC) is designed to collect data on Necrotizing Enterocolitis, its history, treatments, and effects. The registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The Natural History Registry for Necrotizing Enterocolitis provides a convenient online platform for patients or their legally authorized representative to report the information about their dealings with Necrotizing Enterocolitis.
Integrative Review of the Relationship Between Mindfulness-Based Parenting Interventions and Depression Symptoms in Parents
Analysis of the randomized controlled trials showed that mindfulness-based parenting interventions had significant positive treatment effects on symptoms of depression. Analysis of the descriptive studies showed significant inverse associations between mindfulness and depression scores. Although findings were consistent across the studies, the studies varied significantly in participant characteristics, intervention frequency and duration, and measurement tools.
Patient Centered Outcomes Research Institute (PCORI)
How to Develop and Use Effective Patient/Consumer Education
Can Peer Support After Newborns are in Intensive Care Improve Parents' Mental Health and Newborns' Outcomes?
In this study, the research team wants to see if a long-term peer support program can improve babies’ health and parents’ mental health in the year after they leave the NICU. The peer support program connects parents who have cared for a child with special health needs (peer mentors) with parents of a child leaving the NICU.
Mothers and Fathers in NICU: The Impact of Preterm Birth on Parental Distress
Preterm birth is a stressful event for families. In particular, the unexpectedly early delivery may cause negative feelings in mothers and fathers.
The aim of this study was to examine the relationship between preterm birth, parental stress and negative feelings, and the environmental
setting of NICU.
Assessment of a shortened informed consent form for pediatric research: a pilot study
This study was supported in part by the Clinical and Translational Science Award (CTSA) program from the National Center for Advancing Translational Sciences (NCATS) to Tufts University (UL1TR001064) and Harvard University (UL1 TR001102) and a grant from the FDA Office of Orphan Products Development R01 FD003899. The Preemie Parent Alliance leaders and members assisted with this project.
Healthcare Professionals' Views on Parental Participation in the Neonatal Intensive Care Units
Being a nurse, compared to a physician, was associated with an increase in
Role of peer support workers in improving patient experience in Tower Hamlets Specialist Addiction Unit
The aim of the project was to improve patient experience for people in Tower Hamlets Specialist Addictions Unit in order to increase satisfaction by 25% in 12 months starting in August 2014.