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Vol. LXVI, No. 21
October 10, 2014
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Welcome Mat for Potential Participants
‘Clinical Trials and You’ Site Uses ‘Front Porch’ Approach

On the front page...

Web site about participating in clinical research offers personal appeal.
Web site about participating in clinical research offers personal appeal.

Nicholas, a high school honor student who enjoys Brazilian jujitsu, joined a clinical trial so doctors could learn more about sickle cell anemia. He was diagnosed with the disorder as an infant. Melanie has always been interested in public service and wanted to contribute to science. She signed on as a “healthy volunteer” in clinical research because she lost a sister to cancer. Alyssa has a bone disorder that affects only one in a million people worldwide. She and her family found out about taking part in medical studies after they met a scientist conducting research on her condition. Physician-researcher Susan Shurin is a pediatrician. She says that for her and other doctors who become clinical investigators, the rewards multiply “because you end up having an impact that goes way beyond the patient you’re taking care of.”

People involved in clinical research are fascinating. You can learn more about them and get different perspectives on participating in medical research when you visit NIH’s Clinical Research and You (CRAY) web site, www.nih.gov/health/clinicaltrials/index.htm. The site celebrates its third birthday later this month.

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Getting Familiar

Originally launched Oct. 19, 2011, CRAY puts clinical research into familiar terms. Language on the site is conversational. If clinicaltrials.gov, which contains technical study criteria and abstracts from scientists, is NIH’s online home for clinical research, then CRAY serves as a sort of “front porch,” offering a more casual welcome.

Using easy-to-navigate sections—“The Basics” or “Finding a Clinical Trial,” for example—CRAY encourages potential participants to explore clinical research at their own pace, in simple terms.

Under the heading “Personal Stories,” you’ll find details on Nicholas, Melanie and Alyssa as well as on Shurin and her colleagues—in their own words, often in video clips. The “In the News” section lists links to clinical study stories from the headlines. A site “Glossary” translates study-speak into common terms.

“Folks are getting a lot more assertive about their own health care,” said Dr. Marin Allen, deputy director of the NIH Office of Communications and Public Liaison (OCPL), which led development of CRAY. “This site tells the story of clinical research from the perspective of the patients and the researchers, the people actually engaged in asking—and answering—important questions in science and medicine. It was designed as a platform for highlighting and showcasing NIH research and to help people unfamiliar with what NIH has to offer.”

Data Backs Site Development

Back in early 2011, NIH data showed that 85 percent of trials did not finish on time because they had too few patients participating. In addition, 30 percent of trials failed to enroll even one patient. Awareness, or lack thereof, seemed to be the culprit. OCPL formed a clinical research awareness working group to find ways to increase what people knew about partnering with scientists in medical research.
NIH’s Clinical Research and You web site, www.nih.gov/health/clinicaltrials/index.htm, celebrates its third birthday later this month. The newest addition is a centralized list of NIH-related registries where prospective participants can one-stop-shop for studies by diagnosis or condition.

NIH’s Clinical Research and You web site, www.nih.gov/health/clinicaltrials/index.htm, celebrates its third birthday later this month. The newest addition is a centralized list of NIH-related registries where prospective participants can one-stop-shop for studies by diagnosis or condition.

With the help of market research agencies contracted by NCI, NIH conducted surveys to determine the public’s knowledge and attitudes. Results indicated NIH needed a “user-friendly public-facing web site where individuals can visit and learn about clinical trials.”

OCPL started a voluntary—and unfunded—effort with a collaborative trans-NIH panel to develop the more-accessible, plain-language site that became CRAY. Panelists include registered nurses as well as experts on legal policy, ethics, communication and patient recruitment.

So far, 14 NIH components have supplied “highlights,” researcher anecdotes, participant testimonials or other content for the site. Resources continue to expand. The newest addition is a centralized list of NIH-related registries where prospective participants can one-stop-shop for studies by diagnosis or condition. Thirty registries and a handy FAQ section currently are listed on the “registry of registries,” Allen said.

Recently, the panel also brought in more partners to the site. Panel members have reached out to the American Medical Association and other professional organizations to join.

Matchmaker, Matchmaker

“Another recent addition is a link to ResearchMatch database,” noted OCPL’s Jill Bartholomew, who serves on the CRAY panel. Part of a Clinical and Translational Science Award (CTSA) at Vanderbilt University, the secure database connects people looking to participate in clinical studies with clinical investigators looking for participants. Anyone can use the tool to register to be considered for a study. Any scientist at a CTSA organization can access the registry. A kiosk located in the Natcher Bldg. lobby lets people on campus check it out now.

“We have almost 190 enrollments, which is within the top 10 of enrollments among 90 institutions,” noted fellow CRAY panelist Dinora Dominguez, a patient recruitment specialist at the Clinical Center. Not specific to one research team, the enrollments to intramural protocols represent NIAAA, NIAID, NICHD, NIDDK, NINDS, NIDA, NHGRI, NHLBI and CC.

By the end of July, more than 38,800 individuals accessed the resource via CRAY; of those, about 23 percent registered for a study. Registrations in Match via all NIH campaigns topped 12,000. That’s 19 percent of the people signed up in the database.

“CRAY was also designed to address why intramural research is important,” Dominguez pointed out. “It requires a different approach because the criteria is broader. The majority of intramural clinical research involves phase I and phase II trials that are just beginning the [clinical study] process. Many of the protocols involve first-in-humans research. There’s often not a lot of incentive to enroll in terms of a participant’s personal health. We’re looking for very focused, dedicated individuals who decide to participate in studies for altruistic reasons…although intramural clinical trials often promise little to no direct benefit to an individual patient, it is through these trials that we acquire the knowledge to improve the health of future generations.”

Engaging Underserved Communities

CRAY also set its sights on recruiting other groups of people—minority and other communities typically underrepresented in clinical research.

According to OCPL public affairs specialist Carla Alvarez Mells, results from RAND research indicate that many individuals feel they have not been asked to participate in clinical research. “We have a mandate that all government services be translated for limited-English-proficient individuals, so a lot of the resources we’re working on now involve engaging those specific communities with easy-to-read and understand information and graphics,” she said.

As site content and partners continue to amass, CRAY developers hope popularity of the resource keeps pace.

“It’s fulfilling a need in both the public and scientific communities,” Allen concluded.


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