CERN Project V: Awareness, Outreach and Outcomes
— Categories: Press Release Posted on May 13, 2014
We met with Charles “Chas” Haynes, the Executive Director of the CERN Foundation, and Dr. Terri Armstrong, Editor in Chief of the new CERN Foundation Resource Guide and head of the Ependymoma Outcomes Project, both of whom are responsible for leading Project V.
The mission of Project V is to improve our understanding of the impact of an ependymoma diagnosis and treatment, on patients, their families and the community at large through the CERN Foundation’s Awareness, Outreach and Outcomes efforts.
- To advance the quality of life of patients diagnosed with an ependymoma through our Ependymoma Outcomes Project.
- To reach a level of awareness for the CERN Foundation so that all patients diagnosed with an ependymoma can be connected directly, or through their physicians, with the CERN Foundation’s medical team and clinical trials.
- To identify new and better ways to communicate with patients, their families and medical professionals.
- To provide patients and their families with a platform by which they can share their own stories and experiences with ependymoma.
- To offer direct support through our website and the CERN Foundation administrators and clinicians.
- To create and publish a unique and complete guide, specific to ependymoma, for patients and medical professionals (Ependymoma Resource Guide).
- To increase and showcase the amount of original content on our website.
Awareness, Outreach and Outcomes: How we got started.
When the CERN Foundation came to fruition over seven years ago, our team of researchers, scientists, clinicians and administrative members looked at the many facets that would be necessary to create an all-encompassing foundation in order to address the needs of patients diagnosed with an ependymoma. The first items that came to mind, of course were finding a better treatment, and eventually a cure. During those early meetings, perhaps just as important as the aforementioned, was the discussion of ensuring that patients diagnosed with an ependymoma would not only see improvement on their medical imaging, but also improvement in their daily quality of life after diagnosis. In addition, there was the question of reaching medical professionals treating patients diagnosed with an ependymoma, as well as the patients and caregivers themselves, so that we could provide information about newly developed clinical trials, ependymoma specific publications and general support to patients and their families.
What we have accomplished:
To date, through many hours of collaboration and brainstorming, the CERN Foundation has established a number of exciting efforts to help us reach our goals. The following is a list of those efforts that you can learn more about through our Awareness, Outreach and Outcomes Team.
As part of our semi-annual meeting of the CERN Foundation investigators, we created Ependymoma Awareness Day in hopes of bringing attention to this poorly recognized disease. Together we came up with the idea of a live butterfly release as a symbol of hope and renewal for patients and their families affected by this diagnosis. Families from around the world can purchase butterflies through the CERN Foundation website to be released at Ependymoma Awareness Day (April yearly), as well as creating their own local awareness events. We have had families participating nationwide, in the United Kingdom, Canada, Australia, United States and South Africa. To further this effort, we have asked all the CERN Foundation Members and the CERN community to reach out to their local elected officials and ask them to recognize national Ependymoma Awareness Day through a state proclamation.
Online surveys created for both adults and children with ependymoma that include the collection of accurate information on ependymoma epidemiology, the social and psychological impact of the tumor and treatment, and patient quality of life. The CERN Foundation is disseminating existing and new information about ependymoma and strategies for coping with this disease to patients and medical professionals globally. Thus far, we have learned that patients diagnosed with an ependymoma continue to have issues with pain, sleep disturbance, and functional limitations, despite disease control. In response, we have developed educational tools related to these issues to help inform patients and are also beginning to explore the social impact of these issues.
Patient Outcomes Assessment in the CERN Foundation Clinical Trials
Patient reported outcomes are collected from participants in the CERN Foundation clinical trials. This allows us to understand the impact of the treatment on the patient, as well as the tumor itself. Preliminary analysis from the first CERN Foundation adult clinical trial shows a reduction in symptom burden in patients undergoing treatment, further highlighting the clinical benefit of the treatment. We have also developed and validated a self-report questionnaire that allows patients with spinal ependymoma to report the symptoms they are experiencing and the interference of these symptoms on their daily life activities.
This includes online education and presentation of over 20 abstracts presented at professional meetings and 12 manuscripts published in various journals including Cancer, Neurosurgery, Neuro-Oncology, Journal of Neuro-Oncology, Neuro-Oncology Practice. We have also developed educational briefs for patients and families that we include on our website and through social media. This has culminated in the development of the newly created Ependymoma Resource Guide.
In order to expand our outreach efforts further, we continuously work to create partnerships with organizations that have a similar goal of helping patients and their families affected by ependymoma. All of our relationships have proven mutually beneficial in reaching the common mission and we look forward to continuing to cultivate these type of relationships with other organizations. Some of our partnerships are:
Colgate University: For the past 3 years we have worked closely with Colgate University after they discovered their former Offensive Line Coach had been diagnosed with an spinal cord ependymoma. Their fundraising efforts have not only helped benefit our research team, but they have provided the CERN Foundation with yet another opportunity to increase awareness of ependymoma as a disease, and the CERN Foundation.
Santa Barbara Foresters: a farm league for MLB, also had an internal member who had a personal experience with ependymoma, and have named that individual as their honorary bat boy. They have also included the CERN Foundation in their collateral materials handed out at games to further increase awareness.
University of Pittsburgh Medical Center: We have partnered with researchers at the University of Pittsburgh Medical Center to evaluate the benefit of an online program to manage distress in caregivers of patients with brain tumors, and the added benefit of a web-based informational and problem solving program.
University of Texas at Houston Health Science Center: We have joined forces with researchers at the University of Texas at Houston Health Science Center to complete studies exploring the impact of uncertainty and hope on symptom burden and mood. This work has shown that the uncertainty related to the disease and treatment has a significant impact on the patient, supporting the impact of ‘scanxiety’ (anxiety that occurs prior to the MRI to assess disease status), and the importance of hope to patients facing serious illness such as ependymoma. We are currently developing interventions to help patients manage uncertainty and to promote hope.
The CERN Foundation Website
Our website has allowed us the opportunity to meet hundreds of families over the years whether searching for a better treatment option, support, connecting with the CERN Foundation clinicians and researchers and to share their experiences with us. We strive to provide the most up to date research and information on our current clinical trials so that patients and the medical community have this very important information available at a moment’s notice.
New this year, we recorded our first ever podcast, that provided the public the opportunity to reach out to our medical team. We asked the ependymoma community to submit questions that were answered by CERN leadership.
None of these strides could have been made possible without the dedication and hard work of our Project V Team. We are grateful for all of their time, ingenuity and passion to improve the lives of patients diagnosed with an ependymoma on a daily basis.
The Project V Team:
- Saba Abutaseh plays an important role in the coordination of all administrative aspects relative to Project V, and the CERN Foundation as a whole.
- Alvina Acquaye is integral in the coordination of the Pediatric Ependymoma Outcomes project and also provides support as a research assistant.
- Dr. Terri Armstrong has been invaluable as the Editor in Chief of our Ependymoma Resource Guide, as well as the lead on the Ependymoma Outcomes Project and Patient Outcomes Assessment within our clinical trials.
- Charles Haynes plays an instrumental role in the leadership of Project V’s Outreach and Awareness efforts and as the Executive Director of the CERN Foundation.
- Kristin Odom’s contributions have largely led to the creation of the Ependymoma Resource Guide, as well as her involvement in awareness through social media, website and our monthly newsletter.
- Elizabeth “Liz” Vera-Bolanos, works closely with Dr. Armstrong and is critical to the team, managing the Adult Ependymoma Outcomes project.
- Kimberly Wallgren’s dedicated support as the first point of contact for patients and caregivers, referrals, second opinions and inquiries for patients and caregivers has made her a critical point person on the CERN Foundation team.