The STARR News: December 2021 |
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Join us in celebrating the 2021 STARR Award Winners! |
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Wednesday, Dec. 22nd, 2021 - 1pm ET
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We are delighted to welcome
ADAMS CLINICAL
as the latest STARR Certified site!
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Boston-based Adams Clinical specializes in late-phase psychiatric and neurological clinical trials. Hundreds of volunteers have participated in treatment research at Adams Clinical for a variety of CNS conditions, although they specialize in depression, including MDD and treatment-resistant depression. Adams Clinical has a dedicated staff of highly trained psychiatric professionals, including seven full-time doctors overseeing the studies.
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Updates on The STARR Coalition Programs
2021 has been a busy year for the STARR community and we continue to grow and expand our programs and services. Cynthia and Mallory joined the STARR staff this year and when Luke left, the STARR leaders really stepped up to help. Here are updates and plans we have for some of the great STARR programs...
STARR Site Certification:
We are continuing to add new sites to the STARR Certified Sites page and are working with sponsors and CROs to include more. We’ve developed new modules including the diversity pledge (here), a trauma-informed care training module, and increased community and patient advocacy engagement, and we're continuing to provide the Certified Sites with their own personalized advocacy pages (example here). Find more information here.
STARR 911:
STARR 911 is a simple program that, when implemented at sites and call centers, connects screening individuals with suicidal ideation to the suicide lifeline. Although STARR 911 is implemented at several great sites, we are planning on marketing and distributing the program far more broadly throughout the industry in 2022, saving lives, and reinforcing the perception that research patients’ lives and safety are always prioritized by those conducting clinical research. You can find more information and the STARR 911 script on the website here.
Project RockSTARR:
Building relationships between those volunteering to participate in clinical research trials, local advocacy organizations, and clinical research sites is beneficial to all of those involved and offers both immediate and long-term returns. In 2022, we're looking to direct additional resources to Project RockSTARR, so that each active site could receive more specialized training, along with expanded community and advocacy development. Each site advocacy page can be expanded upon to include other resources beyond the local NAMI, MHA, and DBSA chapters, with sites’ input on the local nonprofits with which they work. This would drive improved success and greater advocacy support, which would strengthen the relationships between the research sites and the community, building trust, and ensuring that clinical research is recognized as a trusted care option with the community and beyond. Find more information here.
National Call to Action to Support Mental Health Research:
The goal of the Call to Action is two-fold: (1) to inform the public of the need to support research for new treatment options for mental illness; and (2) to provide simple, actionable ways individuals and organizations can support mental health research. As we move into 2022, we are continuing to raise awareness of the need to support mental health research and generating renewed momentum to support this Call to Action. Find more information here.
Empathy Training via the STARR Auditory Hallucination Simulation:
The Auditory Hallucination Simulation (AHS) is a powerful exercise that simulates what it is like to have auditory hallucinations. It was created to help promote understanding and empathy for those experiencing mental health disorders. Our 2022 goal for this program is getting the AHS into more mental health training programs, university psychology and behavioral health programs, as well as into the hands of providers of mental health services, police departments, family members, friends, peers and communities, providing a greater understanding of the complexities of living with schizophrenia. Find more information on the AHS here.
Community Engagement:
Successful community engagement will raise a site’s profile within the community and educate the public on the benefits of clinical research. Sites that are engaging with the community and building trusting relationships within local non-profit organizations and advocacy chapters are likely to have better relationships with the patients, higher staff morale and job satisfaction, lower staff turn-over, and overall, more successful trials. That’s why The STARR Coalition puts resources into helping sites identify community resources and provide tools to engage with the community.
Workgroups:
Advocacy Board: The board meets monthly to discuss topics on advocating for individuals living with mental illness and research. We are continuing to add new members to our Advocacy Board. Objectives of the STARR Advocacy Board include (1) creating resources for STARR advocacy partners to connect with the mental health clinical research community, and be supportive of and advocate for research within their organizations; (2) providing a platform for the STARR community to connect with our advocacy partners.
Study Volunteer Transition Workgroup: This newly-formed workgroup is tasked with finding useful ways to aid study participants in their transition from the trial back to everyday life, ensuring that they continue their recovery journey. We are in the early stages of this workgroup and have been collecting insight from peer support groups, day treatment groups, and research sites on the benefits of including aftercare for individuals participating in and exiting clinical trials. We began this group after seeing the large gap in participant care following a study and ultimately will include elements in the STARR Site Certification.
Diversity Workgroup: The focus of this group is to ensure progress in research and the mental health workplace by collaborating with other professions to instill diversity, equity, and inclusion practices. The workgroup meets bimonthly to build DEI resources, best practices guidelines, and tools for the STARR community. Objectives include educating diverse communities on clinical research and building trust within communities on the safety and efficacy around clinical research.
Staffing Workgroup: A newly-emerging workgroup that is looking at developing staffing resources and best practices for clinical research sites.
There is so much work to do and with the STARR Community's help and support, we will continue to grow and evolve. We currently have 3 staff members (Mallory, who works with the advocates and is working to bring more advocacy organizations into the community, Cynthia, who manages the RockSTARR programs, and Erica, handling operations and sustainability) and hope to hire at least two more staff in 2022 to help with some of the programs listed above.
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Project RockSTARR Advocacy Ace Awards
We are delighted to have presented the RockSTARR Advocacy Ace Awards to 32 phenomenal researchers this year! The Advocacy Ace Awards are given to individuals whose screened volunteers have designated the most donations to their local advocacy organizations. We'll feature a winner every month.
This month, we're thrilled to spotlight Karen Mitchell of Patient Priority, who has raised $700 in donations for their local NAMI through the RockSTARR program. That check will be delivered to the site so that you can take it to the local NAMI office and build on that relationship. Way to go, Karen!
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Feature Article from an Individual Living with Schizophrenia |
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Building a Support System After Psychosis
by: Douglas Meron
Psychosis is when I have an extremely difficult time determining what is going on in the world with what is going on in my mercurial mind. When I go through psychosis, I believe the entire world is out to harm me and not to trust anyone. For example, my best friend David, who I've know and trusted for over twenty years, suddenly became my enemy. One day, I called David and he replied, “you caught me,” which meant I caught up with him on the telephone. I interrupted that David was a drug dealer and I caught him dealing drugs which was false.
I went through psychosis for over two and a half years non-stop. Everyday was a waking nightmare where I couldn't even trust my Mom; who loves me unconditionally. During that time, I was asked who do you have in your support system? I replied absolutely no one.
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Now if you ask me who is in my support system; I can say my family, my three best friends, three close friends I made throughout the years, the outpatient program I participated in, the hospital, the recovery home, and my current living situation. It is vital for any human being to have a support system. Now everyday I thank my higher power for such a strong support system and express gratitude to my higher power for being in my life. We are social creatures and everybody needs help. So my best advice is to stay on your medications and strive to establish trust through reality testing.
The building up of trust becomes contagious and will become your best ally. I went from a waking nightmare all the time to living a life that dreams are made of. Never give up and realize that life is a continuous process of recovering and growing. No one is ever too far gone from recovering once you find supportive people.
Douglas is happy to share his story. If you would like to contact him, please email Mallory@thestarr.org and she will connect you.
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We exist to create meaningful change by increasing communication, partnerships and goodwill among stakeholders in the areas of mental health treatment, advocacy, and clinical research, with an emphasis on promoting clinical research sites as a valued part of the community and trusted treatment option.
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The STARR Coalition is a 501(c)(3) nonprofit organization, our Tax ID # is 47-4634007. We are happy to provide a form W9 upon request.
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Students With Psychosis is excited to host our second annual RETHINK, February 26th, 2022, with both in-person and virtual attendance options. The purpose of RETHINK is to change the narrative about psychosis while bringing together student leaders and advocates in celebration of our psychosis community. Learn more here.
ASENT Annual Meeting 2021, being held February 28 - March 3, 2022, will be virtual and free to attend. Learn about the latest in neurotherapeutics including innovations across disease states, novel delivery systems, gene therapy and biomarkers, and drug therapies and devices. Learn more here.
Anxiety and Depression Association of America (ADAA) is excited to announce that registration is now open for the ADAA 2022 Annual Conference and that it will be held in person* March 17-20, 2022, in Denver, Colorado. ADAA members are encouraged to register by December 15, 2021.
ISCTM 18th Annual Scientific Meeting, being held February 23-25, 2022 in Washington D.C.. Topics include the latest on CNS developments, decentralized trials in CNS, and what the future of CNS trials may look like. Visit here to register.
ASENT Annual Meeting 2021, being held February 28 - March 3, 2022, will be virtual and free to attend. Learn about the latest in neurotherapeutics including innovations across disease states, novel delivery systems, gene therapy and biomarkers, and drug therapies and devices. Learn more here.
Neurocrine Biosciences would like you to check out their updated resources for the Monumental Moments campaign! Check out a new and improved Advocacy Toolkit as well as some new elements in the campaign.
And some YouTube-accessible blasts from the recent past...
From the Brain & Behavior Research Foundation (BBRF): You can still check out the excellent presentations from the 2021 International Mental Health Research Symposium, held October 29th. There are some great discussions on innovative brain and behavior research, along with a bunch of other topics.
From Mental Health America: If you missed MHA's Our Future in Mind conference, held November 5-6, you can still catch it on YouTube HERE. The first of its kind, this event gives you a front-row seat to the stories behind some of the biggest movements in mental health and the tools you will need to be part of the change.
From Depression Bipolar Support Alliance (DBSA): check out the Behind the Scenes: DBSA’s New Peer DBSA’ Peer Apprenticeship Program from November 9, 2021. The recording is available HERE, passcode to access: nYA40?pu
NAMICon 2021 sessions will be available to registrants on demand through the end of December 2021, providing exclusive access to view recordings any time that’s convenient to you. To access, visit www.namiconvirtual.org, log in using the email address you registered with and the password naminow2021.
From NAMI-NYS: Did you miss NAMI-NYS's Education Conference, Next Wave in Research and Treatment which featured a presentation by Corey Reuteman-Fowler, a STARR founding member.
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Check out this short YouTube video -- it is especially relevant as we are coming into the holiday season. Be Happy.
Thanks to Marcus McCarty-Towers for sharing!
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The STARR Coalition | phone: 501-725-8890 | www.thestarr.org |
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