Tag Archives: Outreach and Communications

DuchenneConnect PPRN Resources: Responses to Community Needs and Data Reporting

This describes the resources of The Duchenne Registry and Parent Project Muscular Dystrophy’s online platforms. The authors of these materials are Parent Project Muscular Dystrophy staff, RTI staff, and community advisors (individuals with Duchenne, parents, clinical and research experts). The need for these tools and content were identified through: voting and ranking at PPMD annual […]

ImproveCareNow: Travel Toolkit

This toolkit was created by members of the Patient Advisory Council (PAC) of ImproveCareNow. The purpose of this toolkit is to share personal stories about traveling with Crohn’s disease and ulcerative colitis, answer questions, and identify tips and techniques that can make travel easier, safer and more comfortable. Use this to inform the creation of […]

PaTH Network Protocol Review Committee (PNPRC)

The PaTH Network Protocol Review Committee (PNPRC) meets to provide an inclusive pre-IRB review of all multi-site network studies going through a central IRB process. Composed of one patient or community partner and one IRB-affiliated member from each participating site, the PNPRC review ensures each of many diverse communities and institutions have input on the […]

PaTH: Survey to Assess Engagement

This engagement survey was distributed to PaTH clinicians, patient partner, and staff.  Results were compiled and distributed to all original recipients. The stakeholder work group reviewed the findings and made recommendations to the PaTH Steering Committee. The PaTH network has also provided the Data Dictionary for the survey for your convenience. Published: September 6, 2018

PaTH: How EHR Data is Collected and Protected via a Chocolate-Making Analogy

This whiteboard video and accompanying visual guide explains how electronic health record (EHR) data is captured, protected, and utilized for research purposes via the PaTH network. This process is illustrated through a chocolate-making analogy, given the PaTH to Health: Diabetes study’s main investigative site is in Hershey, PA. Published: September 6, 2018

PMS-DN: Registry Insight Monthly Newsletter Sample

This is a sample of the April 2018 Registry Insight newsletter from the Phelan-McDermid Syndrome Data Network (PMS-DN) The Phelan-McDermid Syndrome Foundation (PMSF) creates and disseminates a monthly newsletter to members. One article in the newsletter is a piece called the Registry Insight which highlights exciting updates related to the network’s registry. Published: April 2018

PARTNERS: Writing Team Orientation Packet

The PARTNERS Writing Team Orientation Packet provides team members an overview of their roles and responsibilities and the importance of their participation. The PARTNERS Writing Team is part of the Outreach and Communication Committee of PARTNERS. The team consists of parents and patient volunteers who like to write and want to help turn information from doctors and […]

NephCure Kidney Network: Annual Reports

NephCure Kidney Network’s (NKN) Annual Reports are linked below. Use them to learn more about NephCure Kidney Network. NephCure Kidney Network Patient Registry Annual Report – March 2015-March 2016 NephCure Kidney Network Patient Registry Annual Report – March 2016-March 2017 NephCure Kidney Network Patient Registry Annual Report – March 2017-March 2018 Updated: March 2018

CAPriCORN: Online Survey Form

CAPriCORN’s Online Survey Form contains the questions shared with the patients, caregivers, frontline clinicians, and community members engaged in the network. It was used to evaluate the progress of the PCAC and identify areas for improvement. Use this to develop your own engagement survey for your community. Published: August 17, 2018