From the Editor

Dear Readers,

It’s official.  The February 2nd Groundhog Day report has forecasted an early Spring!  And we’re excited to share updates on our upcoming 2020 initiatives.  We’ve also added a new feature for our circle of supporters to announce their new patient education and engagement initiatives.

First, a quick reflection on some 2019 highlights.  CISCRP:

·        Held its first Patient Advisory Board in Asia and initiated its capabilities in conducting patient input panels throughout the region

·        Collaborated with ASH Research Collaborative to engage adult and pediatric sickle cell disease communities in a series of national interactive and educational workshops

·        Collaborated with NCI, The Hope Foundation for Cancer Research to develop a plain language clinical trials summary template

·        Reached millions of people through its National Media Awareness campaign and expanded its

clinical research education channel into minority and underserved patient communities

·        Organized and launched the Aware Industry Consortium among 10 industry leaders to produce AWARE for All educational events and the Journey to Better Health traveling exhibit in major cities throughout the US

In this edition, we are honored to profile Sandy Morris in our Medical Hero Spotlight. Sandy shares her story and her clinical trial journey with ALS.  We also highlight our Health Communication Services team now collaborating with several dozen sponsors and CROs to provide clinical trial result summaries and many other communications — in plain, easy language and in print and digital formats — for patients and their families.

If you have not yet had an opportunity to review the results of our 2019 Global Perceptions & Insights Study results, we have included two articles—one summarizing key findings and the other elaborating on patient preferences and experiences with convenience-enhancing technologies designed to minimize study volunteer burden.

Our 2020 calendar of events is expanding rapidly. Our first AWARE-for-All event is scheduled for April 2nd in Miami and a second on May 20th in Chicago. Later in the year we will be in Philadelphia, Raleigh Durham and Los Angeles.  Our annual Medical Hero 5K run/walk, in collaboration with DIA, is scheduled for June 15th in Washington, DC.  Stay tuned for our 2nd annual Appreci-a-thon, a virtual fitness challenge scheduled for the full month of April. I invite and encourage you to visit our event and conference pages on our web site at for more information.

Lastly, a huge thank you for your ongoing support.  Our impact and growth would not be possible without your time, sponsorship and donations, ideas and encouragement. Together, we are making a difference.

We look forward to keeping you informed on our progress in 2020.

Warm regards,

Joan A. Chambers

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