Category Archive: 2017 Programs and Resources

Research Participant Satisfaction Survey Results


In July 2016, the Johns Hopkins Institute for Clinical and Translational Research randomly selected 500 participants from the Clinical Research Management Services list to receive a survey by email if they were involved in a research study at Johns Hopkins within the last 6 months. The survey, adapted from Kost et al Clin Trans Sci 2014 Dec;7(6):430-40, asked a variety questions including why it is important for them to join a study and to rate the care they received from the research team. The response rate was 34%. This survey will be administered semi-yearly. To view the complete survey and results, visit: ictr.johnshopkins.edu/wp-content/uploads/2016/09/ICTR_Participant_Satisfaction-Final.pptx For … Continue reading

My Chart/Epic Based Recruitment


Through Epic, we now have the ability to invite patients to studies using MyChart. Inviting patients to participate in research studies through MyChart is a new recruitment approach. In an effort to reduce unnecessary communication, the messages are targeted to patients who may be interested and eligible for studies.  The use of MyChart for recruitment requires IRB approval, and extensive care is taken to protect patient privacy. To safeguard patient privacy, PIs and research teams will not be able to see PHI. Patients can always opt out of receiving future invitations through MyChart.  A patient may either email us at … Continue reading

PURE Elsevier (formerly SCIVAL/JHU Experts Research Profiles)


This research tool (which uses the Elsevier PURE model) allows JHMI faculty to identify biomedical experts and their publications by areas of expertise. Designed to facilitate faculty research and project collaboration, the information is based on the published output indexed in the PubMed database. To view the site visit https://jhu.pure.elsevier.com/. If the answer to any of the questions below is yes, this database can likely help you: Do you need to put together multidisciplinary teams to tackle translational and big-science research projects? Could you use help to keep up with the constant influx of new faculty who might be working in an … Continue reading

Contact Us


JohnsHopkinsU (SOM, SON)– Anthony Keyes, Nidhi Atri, Prince Nuamah registerclinicaltrials@jhmi.edu Oncology (SKCCC)– Monica Owens (Jhcccro@jhmi.edu) JHSPH– Miye Schakne (mschakne@jhsph.edu) Kennedy Krieger Institute – Elaine Stashinko (stashinko@kennedykrieger.org) All Children’s Hospital – Jan Wencel (jwencel1@jhmi.edu)

Events and Workshops for Researchers


May 31, 2017 Improving Long Term Outcomes Research On Wednesday, May 31 from 10-11 AM in Tilghman Auditorium, Dale Needham, MD, PhD and his research team will present the many FREE resources for conducting clinical research, funded by his National Heart Lung and Blood Institute R24 national infrastructure grant. This grant has created resources for clinical researchers conducting longitudinal follow-up studies, including: a database of common patient-reported and performance-based outcome measurements and standardized information about them; adaptable tools, templates, and manuals to maximize retention of research participants, including an interactive searchable database of >600 retention strategies; a statistical tool to … Continue reading

2017 Henrietta Lacks High School Day


CRISP Database


Chesapeake Regional Information System for our Patients CRISP is a regional health information exchange (HIE) serving Maryland and the District of Columbia. This a non-profit organization is advised by a wide range of stakeholders who are responsible for healthcare throughout the region. CRISP has been formally designated as Maryland’s statewide health information exchange by the Maryland Health Care Commission. Health information exchange allows clinical information to move electronically among disparate health information systems. The goal of the HIE is to deliver the right health information to the right place at the right time – providing safer, timelier, efficient, effective, equitable, … Continue reading

Presentations


Breakout Sessions Building Trust & Engaging Participants in the Entire Research Process Ken Getz Measuring the Impact of Recruitment Efforts (pdf) Rhonda G. Kost Digital Approaches that Work Jennifer Creasman Use of Mobile Devices to Engage Research Participants Jason Kadrmas Melissa Mueller Practical Guidance on the Use of Social Media for Recruitment Appendix A & B Luke Gelinas Creating Authentic Community-Academic Partnerships in Clinical Research:  Chicago Area Patient Centered Outcomes Research Network’s Patient and Clinician Advisory Committee (PCAC) Doriane C. Miller Recruitment and Retention Wrap Up Lee Bone Janice Bowie From Clinical Trial Research to Reality: Recruitment, Retention, and Community-Engaged Research Sherrie … Continue reading

Cohort Retention


Improving Long Term Outcomes Research This NIH-funded “national infrastructure” grant (R24HL111895), aims to provide resources for longitudinal clinical research studies. The following resources are freely available from the project’s website (www.improveLTO.com): Database of common surveys and tests for evaluating physical, cognitive, mental health, and quality of life outcomes, and standardized information about these measures. http://www.improvelto.com/instruments/ Adaptable tools, templates, and manuals to maximize cohort retention (including an interactive searchable database with >600 retention strategies abstracted from a systematic review). http://www.improvelto.com/cohort-retention-tools A standalone statistical application to address “truncation due to death” when evaluating functional outcomes. http://www.improvelto.com/stats-tools/

OpenSpecimen Tracking


OpenSpecimen (formerly caTissue) is a bio-bank management tool used to collect, manage, process, annotate and distribute bio-specimens and associated data to selected users.  At Johns Hopkins, OpenSpecimen is currently being used in Gastroenterology, Cardiology and Oncology. OpenSpecimen offers a comprehensive feature set, including: Biospecimen collection, inventory, and tracking Ability to track specimen events (thaws, spins, etc.) Customizable support for storage containers (i.e. freezers, shelves, racks, boxes, position) User-definable forms for patient, collection event, and specimen annotations Flexible specimen ordering and distribution workflows Graphical custom report builder Integrated bulk loading capabilities for existing data Support for multiple biorepositories and locations Mailing … Continue reading

Selected Publications


Final Rule Federal Register Notice: HHS Final Rule Federal Register Vol. 81, No 183, September 21, 2016 Federal Register Notice: NIH Policy Summary Table: HHS Final Rule and NIH Policy Summary of Changes: HHS Final Rule and NIH Policy JAMA: Toward a New Era of Trust and Transparency in Clinical Trials NEJM: The Final Rule for US Clinical Trial Registration and Results Information Submission NIH Director’s Blog: Clinical Trials – Sharing of Data and Living Up to Our End of the Bargain NIH Policy on the Dissemination of NIH-Funded Clinical Trial Information Other Publications Anderson ML, Chiswell K, Peterson ED, … Continue reading