CISCRP Calls On US Regulators to Require Lay Language Trial Results Summaries for Patients
Boston, MA – June 21, 2015 – The Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit, is calling on U.S. regulators to address the unmet needs of patients involved in clinical research and improve transparency…. Read More
CISCRP to Bring AWARE Programs to NYC and Chicago
This fall, CISCRP will be hosting three AWARE for All events: its first ever program in New York City on Saturday, October 3 at St. John’s University in Queens, its third AWARE event in Chicago on
From the Editor, July 2015
With a demanding number of 2015 AWARE for All and Medical Hero Appreciation events behind us, we are gearing up for an even busier fall schedule! This summer, we are preparing to bring our AWARE… Read More
CISCRP Staff Raising Awareness and Education
The CISCRP staff has had a demanding travel schedule spreading awareness and providing educational information about the integral roles that the public and patients play in clinical research and how to engage them as partners in the clinical research process…. Read More
Medical Heroes Events Pick up Momentum
Medical Heroes Appreciation 5K events have been picking up momentum achieving record participation levels and financial support through sponsorships. These events are critical to recognizing the contribution of study volunteers; to raising awareness about CISCRP’s mission; and… Read More
CISCRP Revamps its Educational Brochures
The CISCRP Store features a wide variety of educational brochures that address general clinical research participation and that focus on specific issues and audiences including age-specific and minority communities. Sponsors, Clinical Research Organizations, patient advocates, and investigative sites,… Read More
Clinical Trial Results Communication Takes Center Stage
CISCRP is continuing to call attention to the need for transparency and the importance of lay language trial results. One of our most important activities was a petition to the FDA Commissioner, with over 400 signatures, calling for easy to… Read More
New BMJ Policy Requires Clinical Trial Data Sharing
Excerpt from “Why Medical Journals Must Make Researchers Share Data from Clinical Trials” by Elizabeth Loder, BMJ Acting Head of Research: “From July 1 2015, the authors of all clinical trials published by the journal must agree to… Read More
Rethink Research Competition Opens Voting for People’s Choice Award
SAN FRANCISCO, Calif. — July 1, 2015 — The Rethink Research Competition today opened voting for the People’s Choice Award. Recruiting patients for clinical research studies is getting harder and harder every year, making medical progress harder and harder. Many… Read More
Synchrogenix and CISCRP Partner to Help Biopharm Companies Meet Clinical Data Transparency Requirements
PRINCETON, NJ – April 24, 2015 – Certara®, the global biosimulation technology-enabled drug development consultancy and the non-profit Center for Information and Study of Clinical Research Participation (CISCRP), today announced an exclusive partnership to provide Read More
CISCRP and bluebird bio Give Live Webinar June 17
> Click Here to View Webinar Recording! < CISCRP AND BLUEBIRD BIO TO GIVE LIVE WEBINAR ABOUT CLINICAL RESEARCH PARTICIPATION AND RARE DISEASE BOSTON, MA– The Center for Information and Study on Clinical Research Participation (CISCRP) an independent non-profit organization,… Read More
From the Editor, April 2015
Spring is here and our calendars are packed with activity! Event preparations for the upcoming AWARE for All and Medical Heroes Appreciation 5K programs are in full swing. The… Read More
CISCRP and Acurian Host 2015 Perceptions & Insights Roundtable Series
CISCRP and program sponsor Acurian announce a new series of Perceptions & Insights Roundtable events scheduled in 2015. Roundtables will be held in five cities with the next event scheduled for May 7, 2015 at the Chicago Botanic Garden.
Medical Heroes Appreciation Events Expand and Grow
At 6:00am on Monday June 16 more than 300 research professionals, patients, and community members gathered in San Diego to honor clinical trial volunteers at the Inaugural Medical Heroes Appreciation 5K Run & Walk. With generous support… Read More
Patient Advisory Boards Provide Valuable Insight For Study Design and Experience
Patient voices provide invaluable input and insight into clinical research study designs and communications, and in the study conduct experience. A growing number of research sponsors, contract research organizations (CROs), and research centers are turning to patient advisory board panels… Read More
Medical Hero Spotlight: Jonathan Sari
Searching for hope on the horizon Clinical research participants have myriad motivations. They seek relief from pain. They want to help future generations. They want to fight back against their diseases. Jonathan Sari says his… Read More
Lupus Research Institute Becomes National AWARE for All Sponsor
CISCRP is excited to announce that Lupus Research Institute has joined its community of collaborators as a new National Sponsor for AWARE for All – Clinical Research Education Days. Lupus Research Institute is… Read More
AWARE for All Enters Europe with its Inaugural Event in London
On Tuesday, June 9 CISCRP will hold the first international AWARE for All program in London, UK at the Camden Centre in collaboration with EMD Serono/Merck Serono, and the European Patients’ Academy on Therapeutic Innovation (EUPATI). This exciting… Read More
Search Clinical Trials Service Helps Thousands Find Local, Relevant Clinical Trials
Since its inception in 2004, CISCRP’s Search Clinical Trials service has provided invaluable support for prospective volunteers looking to identify relevant and accessible clinical trials. This free service also provides educational information about the clinical… Read More
From the Editor, January 2015
It’s a New Year and the CISCRP team is embracing an exciting and highly active 2015! While creating this latest issue of Patients as Partners, a theme emerged: partnership. Over the last… Read More
New HHS and NIH Proposed Rule Falls Short in Mandating Lay Language
The regulatory landscape continues to move towards a more patient-centric approach to medical research. In November, the Department of Health and Human Services (DHHS) proposed a new rule that would expand public sharing of summary data from clinical… Read More
Medical Hero Spotlight: LuAnne Bonanno
Doing her part to defeat diabetes There’s very little a worried soon-to-be grandmother can do to safeguard the health of her expectant daughter and her unborn grandchild, but LuAnne Bonanno was determined to do what she could. So when LuAnne’s… Read More
Expanding Educational Content With Licensing Agreements
Over the past decade, CISCRP has developed an extensive library of educational materials – posters, brochures, chapters, books, videos — for research sponsors, CROs, investigative sites and other clinical research professionals to use… Read More
With Support from EMD Serono, A New Era for AWARE for All
This past year, CISCRP celebrated its 10th anniversary of its live, award-winning educational program, AWARE for All. This free program brings public, patient, and research communities together to explore the clinical research process… Read More
CISCRP To Launch First AWARE for All in Nation’s Capitol
For the first time, CISCRP will bring its AWARE for All program to Washington D.C. to raise awareness about clinical research and to provide education among a diverse public and Capitol Hill community. This special… Read More
AWARE For All Returns to Boston for 10 Year Anniversary
This coming October, CISCRP will be hosting its fourth AWARE for All event in Boston. The free event has historically attracted between 300 and 500 attendees with more than one-third coming from minority communities in the Greater Boston area…. Read More
Support for Lay Language Trial Results Continues to Grow
CISCRP’s Communicating Trial Results program has had a very busy three months. Study sponsors are showing a strong commitment to providing lay language trial results to study volunteers, with several pharmaceutical and biotechnology companies piloting and expanding… Read More
Over 300 Come Together for Inaugural Medical Heroes 5K
At 6:00am on Monday, June 16 more than 300 research professionals, patients, and community members gathered in San Diego to honor clinical trial volunteers at the first Medical Heroes Appreciation 5K… Read More
From the Editor, September 2014
As we welcome fall and bid farewell to a beautiful Boston summer, the CISCRP team is excited to share with you the latest edition of Patients as Partners. Summer has often brought a… Read More
Medical Hero Spotlight: Jameisha Brown
I heard the word ‘hope’ and knew I had a fighting chance. Eight-year-old Jameisha Brown may not have known the clinical terms for her cancer or its treatment, but thanks to her innate curiosity and the… Read More
New Patient Videos Provide Nondisease-specific Education
We heard you! New CISCRP patient videos provide nondisease-specific education on clinical trials. CISCRP received several suggestions from patient advocacy groups, study sites, and research sponsors for new educational content. We’re delighted to introduce two non disease-specific educational videos to… Read More
Science Museum Exhibit Enters Final Stage of Development
Two years ago, the Center for Information and Study on Clinical Research Participation (CISCRP) — in collaboration with experts in the design of museum exhibits for children and young adults — began developing educational content and design… Read More
Professionals Gather to Discuss Public Perceptions of Clinical Trials
The second Public & Patient Perceptions and Insights Roundtable on May 21st brought together more than thirty clinical research professionals in Princeton, NJ to review the results and implications of CISCRP’s recent global study. Discussions at the interactive forum focused… Read More
Second edition of Ken Getz’s book for patients and the public
“The Gift of Participation has opened my eyes to the clinical trial process and to the resources that are out there. Getz is informative and insightful… this book is well worth the read!” Eileen M., Cancer survivor… Read More
Communicating Trial Results with Study Participants
In 2011, CISCRP launched a first-of-its-kind program to help share clinical trial results with the patients who made the research possible. From the onset, the Communicating Trial Results program was designed to help trial volunteers… Read More
From the Founder, Ken Getz
We’re delighted to bring you the second edition of Patients as Partners, CISCRP’s quarterly update on many of its programs and initiatives. As I’m sure you’ll agree, it has been an extremely productive period for… Read More
Medical Hero Spotlight: Pat Erickson
Pat “Pinky” Erickson calls herself a “doer.” Dynamo is more like it. So when Pat, 57, was diagnosed with Parkinson’s disease 12 years ago, she went into overdrive. Determined not to let… Read More
250 Attend First Cancer-Focused AWARE for All in Houston
On May 9th, a lively group of 250 men and women from the Houston area gathered at Windsor Village for AWARE for All– “Let’s Talk About Ending Cancer” to learn about the process of clinical research, the important role of the participant,… Read More
New Edition of “The Gift of Participation”
The Gift of Participation takes a fresh look at why participation in clinical research really matters. This book addresses what clinical participation means and… Read More
Volunteer Perspectives: Quincy
Like any 31 year-old father of three, Quincy counts his blessings. Unlike other people his age, however, Quincy has had to deal with more than most. As a 24-year-old college football player, he was diagnosed with chronic myelogenous leukemia (CML)… Read More
Patients & Partners: Spotlight Service
CISCRP created its Speaker’s Bureau to help address the common misconceptions among the public about clinical trials and study participants. Since its creation last year, the bureau has grown to be a worldwide effort with willing speakers located in 47… Read More
AWARE for All Seattle
On January 30, a lively, diverse group of people from the Seattle area gathered at Town Hall for AWARE for All Seattle. The event, which was sponsored nationally by EMD Serono, regionally by WIRB, and locally by Benaroya Research Institute,… Read More
The Museum Initiative
During the past year, CISCRP has been developing a new educational exhibition that will present the clinical research process through the eyes of volunteers. This exhibition will travel to museums in 12 cities during the course of a 3-year tour,… Read More
CISCRP’s First Perceptions & Insights Seminar
CISCRP’s first Public and Patient Perceptions & Insights Seminar took place on February 12th at the One Financial Conference Center in Downtown Boston. More than 30 clinical research professionals attended the half-day interactive forum to discuss the results of CISCRP’s… Read More
Inaugural Medical Heroes Appreciation 5K
Partnership with DIA to honor People Who Give the Gift of Participation in Clinical Research We are thrilled to announce the launch of a new event — the Medical Heroes Appreciation 5K Run and Walk in San Diego —… Read More
Patients & Partners: Spotlight Product
Since 2004, CISCRP’s diverse library of videos has helped educate countless patients and their families considering participation in a clinical trial. With eight different titles varying from a general introduction to clinical research to disease-specific titles aimed at minority audiences,… Read More
New CISCRP Study Reveals Improvements in Public Perceptions of Clinical Research and Insights Into Patient Participation Experiences
A new global study recently conducted by the Center for Information & Study on Clinical Research Participation (CISCRP), a Boston-based independent nonprofit, indicates that public trust and perceptions about clinical research and the people who participate in them have shifted… Read More
Simpler Language, More Access to Results Sought for Clinical-Trial Volunteers
Read Full Article on blogs.wsj.com.
Many Clinical Trials Unable to Supply High-Quality Evidence
Read Full Article on Medscape.com.
Services Match Patients With Clinical Trials
Read the Full article on CISCRP’s free Search Clinical Trials Service for the public posted on the Wall Street Journal website.
Quintiles Honored for Supporting Public Education
Boston, MA – July 2, 2010 – On Monday June 14, 2010 the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) held its 2010 Annual Meeting. CISCRP Board Chairman Ken Getz and President & CEO Diane Simmons recognized Quintiles… Read More
Dr. Wendy Harpham — Mentions CISCRP on Healthy Survivorship Blog
Read Full Article on wendyharpham.typepad.com.
Clinical Research Professionals Reach Into Their Personal Pockets and Raise $5K for CISCRP’s National Clinical Research Awareness Program
2009 Site Solutions Summit Attendees Help Further CISCRP’s Cause Ellicott City, MD, October 22, 2009 – Clinical research professionals, including executives from leading Sponsors, clinical research organizations, and stakeholders from clinical research sites came together at the 4th Annual Site… Read More