Journey to Better Health Part 2

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Journey to Better Health is our traveling educational exhibit with the goal to raise awareness about clinical research. The video focuses on the importance of education, participation, and diversity in clinical research.

Journey to Better Health Part 1

Play Video

Journey to Better Health is our traveling educational exhibit with the goal to raise awareness about clinical research. The video focuses on the importance of education, participation, and diversity in clinical research.

Press Release – AWARE for All 2021

Center for Information and Study on Clinical Research Participation (CISCRP) Announces Second Annual AWARE for All 2021 Virtual Event Series

The nonprofit organization aims to boost awareness and interest around clinical trial research through FREE interactive, educational events

BOSTON, MA, March 18, 2021 – Today, the Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to engaging the public and patients as partners in the clinical research process, announced the upcoming launch of AWARE for All 2021 – a free virtual event series designed to educate the general public about clinical trial research and participation. In the series’ second year, CISCRP will host five regional AWARE for All 2021 virtual events across the country from April through November 2021, with a focus on engaging diverse communities to ensure representative and inclusive clinical research for the future.

Supported by local research teams, advocacy groups, and members of the AWARE Industry Consortium (AIC), each regional AWARE for All 2021 event will focus on select medical conditions and therapeutic areas including but not limited to COVID-19, cancer, heart disease, diabetes, hypertension, and asthma. The events offer participants a 90-minute user-friendly webinar led by medical professionals, short informational videos to help participants better understand the process and importance of clinical research, facilitated conversations with real patients sharing their experiences with clinical trials, and a five-minute exercise break to help encourage healthy habits.

Attendees are also able to visit an online informational exhibit center, featuring clinical research and healthcare resources that are free to access throughout the event. The informational center for each event will include exhibits presented by AIC members, including Genentech, Janssen, Otsuka, Pfizer, Biogen, IQVIA, Novartis, CSL Behring, EMD Serono, and WCG, in addition to local advocacy organizations. Attendees can expect a “traditional” event booth experience in a digital format, like one-on-one conversations with company representatives, interactive informational collateral, and digital downloads.

“As we head into our second year with AWARE for All 2021, we have been able to expand to even more communities across the U.S., driving attention to clinical research via locally common conditions and therapeutic areas – all of which are currently the focus of clinical research and require a diverse patient population,” said Phyllis Kaplan, senior manager, events and community engagement, CISCRP. “Through this event series, we hope to give participants a front row seat to learn about not only what clinical trials are but also what clinical research could mean for the community as a whole and, potentially, themselves as they pursue the best treatment possible.”

The first event begins in April and will follow the timeline listed:

  • AWARE for All Northeast (Boston, New York, Washington, D.C., Hartford/New Haven, Baltimore), Thursday, April 15, from 4:30 to 6:00 p.m. EDT.
  • AWARE for All Northwest (Seattle, Portland, San Francisco, Boise, Billings), Thursday, May 20, from 4:30 to 6:00 p.m. MDT.
  • AWARE for All Midwest (Chicago, Columbus, Detroit, Indianapolis, Minneapolis), Thursday, July 22, from 4:30 to 6:00 p.m. CDT.
  • AWARE for All Southwest (Los Angeles, Dallas/Houston, Phoenix, Denver, Las Vegas), Thursday, October 21, from 4:30 to 6:00 p.m. MST.
  • AWARE for All Southeast (Nashville, Charleston, Atlanta, Charlotte, Jacksonville), Thursday, November 18, from 4:30 to 6:00 p.m. EST.

“For nearly 20 years, CISCRP’s mission has been to educate individuals on the positive effects clinical research has on patient outcomes, and we’ve found reaching out through thoughtful, community-based efforts like AWARE for All – even amid the pandemic – is where we can make the biggest impact,” said Ken Getz, founder and chairman, CISCRP. “While awareness for clinical research has never been higher, we understand there is still a level of hesitation and lack of clarity among the general public. Now is arguably the most important time in history to educate these communities about the clinical trial process and introduce potential participants to studies that can lead to even more groundbreaking discoveries.”

To learn more about AWARE for All 2021, including community registration information, visit ciscrp.org/events/aware-for-all/aware-for-all-events-2021. Organizations interested in sponsoring the series or exhibiting in the virtual informational exhibit center should contact CISCRP at awareforall@ciscrp.org or 877.633.4376.

About CISCRP

The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. CISCRP provides free education and outreach to the general public and patient communities. Visit www.CISCRP.org for more information or to participate in CISCRP’s educational initiatives. For additional questions about AWARE for All, contact awareforall@ciscrp.org or call 877-633-4376.

Media Contacts:

Jillian Hammell | Crowley Webb for CISCRP

jillian.hammell@crowleywebb.com 

716 856 2932 x237

Basics of Clinical Trial Participation

  • How new treatments are developed under specific requirements and different study designs
  • Regulatory oversight and guidelines are in place for the conduct of safe and ethical clinical trials
  • How clinical trials are adapting to make them more accessible for participants

General Clinical Research Overview

  • Overview of clinical trials and the process.
  • Different study phases, meanings and timelines.
  • Safeguards in place when participating in a clinical trial.

MT Pharmacy

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CISCRP collaborated with Sanofi and Langland to develop a public service announcement showing what the world would look like without clinical trial volunteers.

Here’s a hint – empty.

What is Informed Consent? eConsent?

Video provides a clear overview on Informed Consent and eConsent

  • Process of learning and agreeing to be in a clinical trial
  • Who to speak with and ask questions before participation
  • After giving consent, the choice to stop participating at any time for any reason
  • Understand the purpose, length, risks, benefits and what will happen during the clinical trial

Made possible by a sponsorship from Otsuka.

Medical Hero Spotlight: Rachel Patties, Congenital Generalized Lipodystrophy Advocate

Oklahoma Mom on a Mission Reflects on Daughter’s Rare Diagnosis

Rachel Petties, a mother of five, refuses to let her daughter’s rare genetic disorder define the lives of their family.

From the moment she first laid eyes on her daughter, Rachel Pet­ties knew something was wrong.

“Alani was all muscle,” she recalls. “She had no body fat whatsoever. Her head size seemed abnormal, and her belly was very large. She was stiff and cried all the time.”

It was the beginning of a diffi­cult journey.

“I ended up dragging my infant baby girl in and out of hospitals, doctor to doctor, specialist to spe­cialist,” Petties says. “You have no idea what loneliness is until you have to pack your child up, hop on a plane and trust someone to help you when you know no one else believes you.”

Receiving the diagnosis
In 2015, Alani was clinically diag­nosed with congenital general­ized lipodystrophy.

“My world crashed, and I’m still recovering from the loss,” recalls Petties, a single mother of five. “Receiving her diagnosis was a bit­tersweet moment – my suspicions were confirmed, but I was very sad because what was wrong with her was worse than I expected.”

Alani, now 4 years old, was enrolled in a long-term clinical trial program at the National Institutes of Health to evaluate her treatment and find improved ways of treating the disease through pre-screening and other medical advances. The hope is to prevent future complications by identifying and addressing problems early on.

“She’s a patient for life,” says Pet­ties. “I’m extremely encouraged. Alani has elite specialists study­ing her case. She’s monitored closely and watched by top profes­sionals in the field.

“We have to travel once a year to Bethesda, Maryland for a host of tests that usually last 2-3 days. It’s a very stressful time for us, but we know it’s necessary.” 

Finding the strength
Petties’ days are long and exh­austing. She must prepare special foods for Alani and is the only fam­ily member trained to administer crucial injections.

“It’s very isolating, and I’m afraid of what will happen if I’m ever physically unable to give her this medicine,” she says.

Restricted mostly to the ind­oors, Alani can be awake for 24 hours and sleep for 15 hours str­aight. Her home must be bleached daily to fight germs, and she must be monitored for exces­sive eating.

“Before gaining some control over this disorder through the clinical trial she’s cur­rently on, Alani would eat the paint off the walls, erasers, socks and soap;’

Petties says Although she’s cut back dramatically to focus on her kids, Petties is committed to getting the word out about lipodystrophy.

“I woke up every morning with the mentality to outrun this disease,” she says. “I ran state to state, city to city, advocating with every ounce of life in me. We marched in Washington and visited senators’ offices, petitioning for their help.

“Sometimes you’ll want to fight, other times you won’t care one bit. I had to teach myself that it’s important to be okay with all those emotions and just get through the day, because every day Alani wakes up is another day this disease didn’t win.”

Alani, who enjoys dancing and performing karaoke, knows she’s different and doesn’t care, accord­ing to her devoted mom. And although weary, Petties herself finds beauty in the darkness.

“I am rare,” she says. “I am a mother of a child who holds a title of 1 in 10 million. That by far is nothing to be sad about. She is incredible and unique, and she’s all mine.” 

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.