Jareen Meinzen-Derr, PhD receiving ACTS Team Science Award

Many members of our CCTST community recently attended the Translational Science 2024 meeting in beautiful Las Vegas! Teams from Clinical and Translational Science Awards from across the U.S. were represented. The meeting brings together trainees, faculty and staff at all levels to teach and learn about clinical and translational science, with a focus on innovating to increase equity across clinical research and translational science. We are very proud that our own Dr. Jareen Meinzen-Derr was Co-Chair of the meeting. Dr. Meinzen-Derr also received the prestigious Team Science Award from the Association for Clinical and Translational Science.

A remarkable 11 CCTST members were first authors on posters presented on cutting-edge topics at the meeting, including Drs. Ishita Basu, Jason Blackard, Lori Crosby, Jackie Knapke, Jack Kues, Angela Mendell, and Jeff Strawn, and Ms. Stacey Gomes, Holly Flake and Erin Kingsley. Many others served as co-authors on posters.

Ishita Basu, PhD

Jackie Knapke, PhD

Holly Flake & Erin Kingsley, MPH

Jeff Strawn, MD

Jason Blackard, PhD

Lori Crosby, PsyD

Stacey Gomes, MS

Jack Kues, PhD

Angela Mendell

Meg Zeller, PhD with K Scholars: Alex Corley, MD, Meera Kotagal, MD & Ishita Basu, PhD

Jessica Kahn, MD & Alex Corley, MD

CTST members also presented in workshops and panel discussions. Drs. Jessica Kahn, Lori Crosby, and Meinzen-Derr presented a workshop titled, “Strategies for successfully implementing a faculty diversity, equity, and inclusion plan using CQI principles” and Dr. Meinzen-Derr presented on, “The Art of Equity in Recommendation Letters,” “Tranlsational Science and Strenghtneing Partnerships,” and “Inclusion with Equity: Safeguarding Safe Spaces.” Drs. Crosby and Meinzen-Derr presented on, “Improving Data Equity Throughout the Research Process.” Angela Mendell presented on, “Fostering Transformative Growth in the Clinical Research Workforce through the SIG Brain Trust.”

Ishita Basu, PhD presenting at the Three Minute Thesis (3MT®) Competition

We are also extremely proud of our K Scholars Drs. Ishita Basu and Alex Corley, who participated and advanced in the Three Minute Thesis (3MT®) Competition. Both Scholars made it to the semi-final round, with Dr. Corley advancing on to the final competition and winning the Early Career Scholar competition award!

Alex Corley, MD receiving the Early Career Scholar award at the Three Minute Thesis (3MT®) Competition

Alex Corley, MD & Lori Crosby, PsyD

Alex Corley, MD & Meg Zeller, PhD

Next year the Translational Science meeting will be held in Washington, DC from April 15-17.

In May 2020, the National Institutes of Health-funded Rare Diseases Clinical Research Network (RDCRN) launched an online survey to find out how the COVID-19 pandemic impacted individuals with rare diseases, their families, and their caregivers. Click here to learn more.

Results from the survey have been published in the Journal of Medical Internet Research (JMIR) Public Health and Surveillance (PHS). Insights from the survey - including access to care, medication use, and mental and physical well-being - highlight the unique challenges faced by this population and how we can better support them. Click here to view the published article.

The Schubert Research Clinic (SRC) has a long history of providing high-quality clinical resources to support researchers throughout the Academic Health Center. As the patient interaction arm of the CCTST, it serves as a “one-stop shop” for studies, providing virtually whatever study teams need, from providing physical space for research study visits to collecting patient biological samples and study data necessary for clinical research.

Our clinic was named for Dr. William Schubert, the founding program director of the original Clinical Research Center (CRC) starting in 1963 here at CCHMC. Over the years, the clinic has gone through several iterations, and in 2015, we honored Dr. Schubert by renaming the CRC to the Schubert Research Clinic, moving into the first floor of the T building.

Today, the SRC offers a vast array of facilities, space, and services for patient-oriented research. A few examples of our resources include the availability of research nurses, dietitians, imaging services, biochemistry, and processing labs. The SRC was designed with the comfort and convenience of our research study participants in mind. It has 28 exam rooms fully equipped for data and specimen collection, as well as safety and comfort for the study participant. The clinic also houses areas for monitoring exercise and play activities, as well as rooms to accommodate special populations.

The SRC clinic staff comprises experienced clinical research nurses who maintain clinical competencies and research certifications. The clinic staff provide a high level of care to participants and are trained to professionally handle complex, detailed research observations and precise collection of specimens. We offer scatterbed services where our clinic staff go to an inpatient or outpatient unit elsewhere in the hospital to collect specimens or perform observations.

Our services are available to investigators based at UC as well as CCHMC. We are licensed and credentialed to perform research services at UC as well as off-site locations in the community such as nursing homes, schools, or conference centers.

The Sample Processing Laboratory is located in the center of the SRC and houses specialized equipment for prepping samples. This includes centrifuges, a vortex, a water bath, a dry incubator, and several freezers and refrigerators. Two research assistants staff the lab during SRC operating hours and provide the convenience of sample preparation once collected in clinic. Blood, urine, stool, saliva, and other biological specimens can be stored as needed until shipped or analyzed elsewhere.

The Bionutrition Core of the SRC is led by a registered dietitian and staffed by technicians with expertise in obtaining research quality data in nutrition and body composition. Bionutrition offers the following resources and services for clinical research:

• Dual energy X-ray absorptiometry (DXA) and peripheral quantitative computed tomography (pQCT) for analysis of body composition, bone density, and other bone measures

• Detailed analysis of dietary intake of study participants by certified interviewers, using NDSR software

• Resting metabolic rate/resting energy expenditure assessment using indirect calorimetry

• Anthropometric measurements including height, weight, circumferences and skinfold thicknesses

• Assessment of body fat, lean mass, and body water using DXA or InBody 570 bioelectrical impedance analysis (BIA)

• Development and preparation of study-specific meals in our metabolic research kitchen

 The Biochemistry Core Laboratory is a CLIA/CAP-certified lab that provides investigators with the expertise, facilities, and services necessary to execute most commercially available clinical and research assays. We offer an analyte testing service for Investigators in the following disciplines: Bone health, bone research, nutritional status, endocrine, cytokine, general clinical chemistry. Our equipment includes seven automated analyzers sufficient to perform a wide array of assays such as general clinical chemistry, chemiluminescent immunosassay, HPLC/UPLC, RIA and ELISA. Also available is a Vetscan VS2 benchtop chemistry analyzer for murine testing, comprised of an expansive menu that includes chemistry, electrolytes, acid-base and immunoassay tests.

Ready to start your study in the SRC? During IRB submission for the study, select SRC as a location and fill out the SRC intake form. When the study has IRB approval, you’ll be connected with an SRC Protocol Nurse to start the process for study implementation. Our protocol nurses are experienced clinical research nurses who facilitate study implementation by serving as the liaison between the study team, SRC clinic staff and all other service providers needed to carry out the study (ie: Investigational Pharmacy, Radiology, Clinical Lab, etc.). The protocol nurse will develop data collection flowsheets and study-specific physician orders and work closely to ensure a successful visit for the SRC staff, study team and participant.

We hope you’ve enjoyed this overview of the Schubert Research Clinic at CCHMC. If you would like to know more, please visit our website Schubert Research Clinic or email us at schubertresearchclinic@cchmc.org.

The CCTST is excited to welcome both Taylor Groeschen and Mo Kelly to the CCTST staff! Taylor is joining the CCTST evaluation program as the new program management specialist, and Mo will be spearheading the new UC Research Participant Advisory Council (RPAC).

Taylor Groeschen is a team-oriented multimedia specialist who is passionate about innovation and new technologies. She received a Bachelor of Arts in Interactive Media Studies from Miami University and recently a certificate in Project Management from eCornell. Taylor has worked in a variety of different industries prior to joining CCHMC such as a Marketing Start Up, an eCommerce Junk Removal company, a Credit Union and even an Esports organization. She has experience in program management, social media marketing, video editing, event planning, various CCHMC administrative policies and procedures and assisted in recruiting and retaining patients for a NIH funded study involving 650+ participants.

In her new role for the CCTST evaluation program, Taylor will be responsible for maintaining and implementing the evaluation program’s operating procedures, operationalizing evaluation program projects, implementing the process for collecting CCTST dashboard metrics, and supporting data dissemination.

Mo Kelly comes to the CCTST from the non-profit sector having worked with Catholic Charities, Mercy Health and most recently St. Vincent De Paul where she facilitated social justice education with community stakeholders. She has her Bachelor of Arts in Education from the University of Dayton.

As the UC RPAC program manager, Mo will be instrumental in getting the UC RPAC up and running, offering researchers the opportunity to connect with patients, families, and community to improve research and health outcomes.

CCTST KL2 Associate Director, Moises Huaman, MD, and faculty from UC/CCHMC visited San Marcos University School of Medicine (UNMSM) in January 2024.

UC is part of UNMSM’s inter-institutional alliance for the Doctorate of Excellence in Health Sciences, in which they assisted UNMSM with their submission to establish this new PhD program and international alliance in Health Sciences. This is the first step towards an inter-institutional collaboration between UNMSM and UC, which benefits both academic institutions and contributes to health sciences education in the Americas.

More information about their partnership can be found here.

CCTST KL2 Associate Director, Moises Huaman, MD, along with colleagues at UC/CCHMC, partnered with Impacta PERU and Peru Clinical Trials Unit (CTU) to host the second CATHIA (Coronary Atherosclerosis and TB HIV Immune Activation) Research Symposium in Lima, Peru. The UC/CCHMC delegation included Claire Chougnet, PhD, Elaine Urbina, MD, Carl Fichtenbaum, MD, Rocio Egoavil, and Pablo Alarcon.

The research symposium focused on the interplay between infection and non-communicable diseases. Impacta PERU and Peru CTU are part of Dr. Huaman’s R01, which is expanding clinical and translational science collaborations with colleagues in Peru and globally.

Academic sponsors for the symposium included the UC Center for Cardiovascular Research.

The Community Engagement Core Speaker Series took place on December 7, 2023, via Zoom, titled "A Mother Knows Best: Centering Black Mothers' expertise in autism research," was an engaging and thought-provoking series followed by an interactive component. This was led by an expert and author in Black Participatory Research, Elizabeth Drame, PhD., Veronica Nolden, Tara Adams and Judy Nardi, parent co-researchers. Followed by a powerful spoken word piece from Camille Jones of Elementz. The event recognized the 2023 CCTST Community Health Transformation Awardees:

• Practice-Based Research Awardee:

• Tri-State Child Health Services (TSCHS) & Cincinnati Children’s Hospital

• Academic-Community Research Partnership Awardees:

• KIND – Keeping Infants Nourished and Developing Program in partnership with The Freestore Foodbank & Cincinnati Children’s Hospital

• Adams County Health Department, Dr. Hablitzel in partnership with University of Cincinnati (UC) Department of Psychiatry, Dr. Bruns

• Academic-Community Partnership Student Awardees:

• Arielle Martinez of the UC College of Medicine & Equitas on their project “Risk Calculation for Breast/Chest Cancer in Transgender Cincinnatians: Providing Affirming Screening.”

• Abigail Groszkiewicz & Joseph Walden of the UC Student Run Free Clinic in Partnership with The Healing Center

• Integrating Special Populations Awardees:

• Dr. Shaffer & Krushawna Harper in partnership with Autism & We

• Dr. Anita L. Brentley Community Health Advocate Awardees:

• Steve Sunderland Founder, Cancer Justice Network (CJN) & Founder, Coalition for Health Justice

• Gloria Walker - Executive Director, NAMI Urban Greater Cincinnati

The CCTST Acute Care Research Core (ACRC) hosted its 3rd Annual ACRC Symposium on November 20, 2023. This year’s symposium theme was “Cutting-Edge Research, Innovation and Advancements in Acute Care”. 

The symposium featured keynote speaker, Francis X. Guyette, MD, MS, MPH, from the University of Pittsburgh. Dr. Guyette's presentation was entitled, "Innovating in Prehospital Investigation, Shedding LITES and Making a PACT with PAIN".

Additional events included a presentation from David Ficker, MD, Michael Linke, PhD, and David Robinson, MD entitled, “Minimal Risk Studies in High Risk Clinical Settings”, presentations from previous ACRC awardees (names and presentations listed below), along with a panel discussion regarding consent strategies in acute care research.

Slides from the symposium can be viewed here.

The goal of this annual event is to highlight leadership and innovation in the challenging acute care research setting, and to promote awareness and foster collaboration regarding cutting-edge research being conducted at Cincinnati’s Academic Health Center. Acute care research is defined as research that occurs within 24 hours of a visit to an emergency department or an unscheduled admission, or within 24 hours of identification of a new or worsening condition characterized by sudden onset requiring immediate care.

Previous awardees and presentation titles:

Justin Benoit, MD: Cincinnati Biorepository to Enhance the Acute Resuscitation of Cardiac Arrest Patients (Cincy BEARCAT)

Lane Frasier, MD: Team Performance and Natural Language Processing

Michael Goodman, MD: Early Serum Markers Predict Trauma Patient Outcomes

Christopher Richards, MD: Concordance of Dispatcher and EMS Stroke Recognition

K Scholar, Alexandra Corley, MD, MPH, FAAP, assistant professor in the CCHMC Division of General and Community Pediatrics, was lead editor for a special issue containing a collection of articles about novel educational innovations focused on antiracism in the Journal of Academic Pediatrics. Dr. Corley led the process of the call for articles, article review/scoring/selection, and led our group of reviewers in composing corresponding narrative pieces that book-end the article collection. Click here for the full journal article. The journal has a podcast with an episode that highlights the special issue here.

K Scholar, Chidiogo Anyigbo, MD, MPH, assistant professor in the CCHMC Division of General and Community Pediatrics published as 3rd author in JAMA Peds "Behavior Problems in Low-Income Young Children Screened in Pediatric Primary Care." JAMA Pediatr. 2023 Oct 16. doi: 10.1001/jamapediatrics.2023.4229. Epub ahead of print. PMID: 37843850) that has been featured on the CCHMC science blog.

Key points outlined in the article:

Question: What are the trajectories of emotional and behavioral adjustment among children 2 to 6 years of age visiting pediatric primary care and what variables are associated with differential courses?

Findings: Of 4 trajectory groups identified in this cohort study of 15 218 children, 3 reflected clinically elevated levels of emotional and behavioral problems over time. Relative to the nonelevated group, children in the elevated groups were more likely to be male, White, receive public insurance, and have a social need and a caregiver with depression.

Meaning: Differential patterns of trajectories over time underscore the importance of early identification of emotional and behavior problems in pediatric primary care; mitigation of social needs and depression among caregivers may lead to improved trajectories.

K Scholar Program Graduate, Laquita Jones, DO in the Division of Oncology, Cincinnati Children’s Hospital has been named to the Business Courier's 2023 Forty Under 40 class. This honor recognizes Greater Cincinnati’s next generation of young leaders and innovators. LaQuita is among 40 individuals, under the age of 40, who are professional rising stars and making great strides in shaping our community's future. For more information regarding this honor click here.

Malika Muhammad (they/them) just joined the RPAC recently and was asked to share their experience and thoughts about their research journey, the importance of research and joining the RPAC as our spotlight research participant for this edition! The following are their responses.

1) Tell us a little about you...

I am a Non-binary Sickle Cell Warrior! My favorite music artists are Beyoncé & Kehlani. I enjoy being outside in the sun, all kinds of art, and innovating makeup looks. I’m a huge advocate for BIPOC+, LGBTQIA+, and Community Health. My zodiac sign is Pisces!

2) Can you share a little bit about your journey at Cincinnati Children’s, including your research experiences?

I was a CCHMC patient since after birth to age 21. I have been in various research studies from questionnaires to MRI studies to blood draws and medications. Typically, the focus was to track my development as a person living with Sickle Cell Disease (SS) or to help treat my symptoms. I was born in 1999 so I’ve experienced a lot of progress in helping to find a cure. In 2020, I began to work for CCHMC as a Community Health Worker on a research study to help SCD teens transition! I have since become a Certified CHW and now, I consult on multiple research projects to help improve Health Equity. The RPAC is a brand-new experience for me, and I’m so grateful to represent SCD Warriors and our Transgender communities. I was thrilled to see a project that exists to include more voices from all walks of life. It’s beautiful to see the patients have a say in what they’d like to see from research!

5) What motivated you to participate in research?

I feel like my motivation was different for each study. For the most part, I was genuinely curious about the impact of what the research could provide! The research I did seemed like it was going to help future generations of Sickle Cell patients. I appreciate research with good intentions, especially if it includes diverse communities of people. I was interested in how the medicines I took for research could improve my general well-being, and I wanted to know if I could feel a difference. Also, I am a data person, so I was interested in seeing the progress and results as well!

7) Why did you join the RPAC? What has been surprising to you about the RPAC?

I joined RPAC to use my voice with a council of representatives to help change how our communities get our research information. I want more representation from the youth. These are the people CCHMC works for, and we need more opportunities to express our ideas and interests! The RPAC has been a very welcoming environment and I’m learning new ways that research works as well. It’s a win-win to be informed and to be consulted with!

11) What would you tell your peers about research who are hesitant to participate?

Try looking at research as a learning opportunity! See what you can know more about and how the research works. If you have questions, ask away, and talk about your challenges too! The researchers are there to help you understand the process and uncover insights to your conditions. No matter the length of the study, you have the chance to grow. You could explore a part of science and technology you never knew about. You have a new opportunity to develop your health, and it’s cool to learn what works for you and what doesn’t!

12) What would you say to researchers about the RPAC?

I would tell more researchers to come to RPAC to hear from the people you study! Get to learn the population you serve. Change your approach and do something different than you’ve always done. Get out of your comfort zone and explore the lives of your patients. If you want to see more retention, more progress, and more collaboration, then you would really benefit from showing up at our communities. The RPAC is a great place to start!

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya.

K Scholar Graduate, Arun Jose, MD, assistant professor, UC Department of Internal Medicine, Division of Pulmonary, Critical Care and Sleep Medicine, was awarded a National Heart, Lung and Blood Institute K23 for his project entitled, "Biomarker Discovery in Portopulmonary Hypertension".

Portopulmonary hypertension (PoPH) patients suffer from a cardiovascular disease with very high morbidity and mortality that occurs exclusively in those with underlying liver disease. Although both the incidence and prevalence of chronic liver disease and PoPH have been increasing, the mechanisms by which liver dysfunction leads to PoPH, the optimal markers of disease, and the best treatments to improve outcomes in this high-risk population, are all poorly developed. This work, focusing on dysregulated vascular endothelial growth factor signaling and hepatocellular dysfunction, addresses this urgent and growing clinical need by identifying and developing new biomarkers that will enable more accurate diagnosis, improved risk stratification, and more precise treatment for patients with PoPH, ultimately leading to improved clinical outcomes in this high-risk population.

July CRP Monthly Meeting Research Participant Panel

Every year in July the Clinical Research Professionals’ (CRP) monthly meeting offers CCHMC clinical research staff the chance to hear directly from research participants about their experience in participating in research. Each year participants from varied research study experiences share their perspectives, including why they participate, what went well and what could be better.

On July 26, 2023 seven research participants/family members shared their research journey stories:

• A mom with 2 young children who both are participating in a rare disease study

• A sickle cell research participant, community health worker who has been on study staff working with sickle cell adolescents

• A mother and daughter sharing their story of participating in many studies through the years

• An adult participant who has done 3 studies through Gamble, including a COVID study, motivated by the death of a loved one

• A mother and daughter who shared the experience of participating in research at another institution while clinical care is happening at CCHMC

CRP Leadership/WE C-RAB Collaboration Lunch n’ Learns

The CRP Education Committee, along with the Leadership Committee, also began a Lunch n’ Learn series through collaboration with the West End Community Research Advisory Board (WE C-RAB). Two lunch n’ Learns have been held this year so far, on May 12th and August 30th.

At each event, four WE C-RAB members dialogued with CRPs about conducting community research and sharing their perspectives about participating in research. Topics covered ranged from the consent process to recruitment and creating greater connections with local communities.

Research Coordinator Jordan Baker talks through the PRECISE-ED Study with WE C-RAB member MaeLesha Lee in the consent role play.

Learnings/Takeaways

The following are some of the takeaways shared at these events about what to matters to participants and community members when conducting human subject research:

• Be Clear and Transparent. Thoroughly answer questions, explain timelines and procedures thoroughly, and remind participant of voluntariness – this helps with feelings of safety.

• Coordinate and combine! As much as possible, research and medical teams should collaborate to combine appointments (time commitment is a challenge) and procedures (avoid multiple separate sample collections, etc.) as much as possible.

• Check-in between visits (longitudinal studies). In the case of a longitudinal study with large time gaps, remember to check in more frequently with participants and give more reminders between visits – feels more personal and helps ensure a reduction in study attrition.

• Share results/data. Share individual test results and study data whenever possible – helps participant understand their contribution and provides incentive (study newsletter with updates).

• Involve Families in decision-making. In the case of rare disease studies, the medical team’s willingness to involve/consider options helped the parent to feel empowered and part of the decision-making process.

• Personal Touch Matters: Be personable and build trust. Offer a personal touch like remembering face/name/personal details – avoid treating participants like just a number or “lab rat”. Show you are paying attention and care.

• Thoughtfully Approach about Research.  Consider the appropriateness of your timing when approaching a hospitalized patient – they may be very ill at the time or recovering from major surgery. Parents of hospitalized children are under a great deal of stress. Start by asking how they are doing – this gets their attention and allows them to clear their head for that moment.

• Be Mindful of Accessibility. Keep patient’s accessibility needs in mind when scheduling visits and procedures.

• Create Environment Conducive to Speaking Up/Asking Questions. Create a space where the parent/patient feels comfortable/empowered to speak up about concerns.

• Ways to engage more with local communities:

  • Word of mouth.

  • Connect with local organizations related to your area of interest.

  • Build relationships with community members and accommodate their needs.

  • Go to PTA/community meetings and local events to be present, engage and build relationships.

  • The ideal community/research partnership benefits both sides.

Consent Tips

• Start Simply with “The Ask.” At initial contact, simplify what you need from the participant and say it up front.  Potential Subjects can get a better idea if it’s something they can or want to do before going through the entire consent.

• Avoid Acronyms/Scientific Jargon. Don’t use a lot of acronyms or scientific jargon when describing the research study – explain things in layman’s terms – many people do not have a scientific or research background.

• Use Visuals. Use visuals/schedule diagrams to explain studies with multiple timepoints and sample collections, etc.

• Break Often for Questions/Check for Understanding. Ask frequently if the participant needs anything clarified – don’t wait until the end of a 20–30-minute consent to see if they have any questions.

About the RPAC and WE C-RAB: The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya.

Leslie Wieber joined the Research Participant Advisory Council (RPAC) in November of 2022. In addition to the RPAC, Leslie has served on the Family Advisory Council for the Division of Developmental and Behavioral Pediatrics for the past 4 years. She lives in Taylor Mill, KY with her husband of 16 years and her three sons, Brock (14), Drew (13) and Tyrus (11). Her engagement with research began when her 3 sons were diagnosed with Fragile X Syndrome in 2012. They dove right into any and all research studies they qualified for. “We truly believe there are better treatments and maybe even a cure for Fragile X Syndrome, so we continuously participate in research to help ourselves and other families,” Leslie said.

She loves anything outdoors and goes "hiking" with her boys a lot. “My husband is 6'9" tall so we always try to find Bigfoot in the woods because he's ‘big like Dad’! What began as a fun game to get them outside often has turned into people they know sending them Bigfoot themed merchandise and articles from across the country,” says Leslie. Besides hiking, she loves reading, baking, playing in volleyball leagues with friends and traveling on fun little weekend adventures with her family.

“Patients and families are critical in helping the professionals with better treatment in every department of Cincinnati Children's Hospital.” –  Leslie

What motivated you to participate in research?

For us it's always been a no-brainer to participate in research. We have trusted our professionals when they say it is safe for our boys or myself and we have experienced Direct results from research studies we've participated in. Such as when my youngest learned to talk at age 7, by participating in a clinical trial.

Overall, has participating in research studies been a positive experience for you? Please explain.

Besides the direct results we've experienced, participating in research has also allowed my sons to become and stay familiar with the hospital which prevents some fear and anxiety the next time we return. We like that we stay fresh in the minds of our fragile X doctors and research team so that when I have an issue that comes up, they already know our son's well and they can help us tackle whatever we are dealing with. Things like EEGs and blood draws become "easier" because we participate so often.

What would you say to others about research and participating in research?

I would encourage others to give research a try because I think all of us are searching for more personal attention from a hospital that is so large and in our experience the more often you go the more nurses and doctors get to know you and even if they don't see you on a regular basis they are going to remember your name and something about you or your family. When you participate in research you are helping your own family and the greater good of the community. Professionals and researchers cannot further medicine without the help of patients and Families. It feels good to do our part!

How has being on the RPAC helped you?

I think it has reminded me there's a whole wide world of patients and families outside of our special needs world which is why we are at the hospital 90% of the time. Sure, we have friends with complex medical needs, but it is a learning experience to be among families that have research experience in much different parts of the hospital.

What would you say to researchers about the RPAC?...about why they should come to the RPAC?

I would say that many do not know about the research in individual departments. You should absolutely get in front of the RPAC to make your cases known because we are from all walks of life throughout the hospital and we all have our own Circle of friends and family we go back and share it with so the word just constantly keeps spreading.

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya.

Learn more about the Research Participant Advisory Group including the RPAC and WE C-RAB and how they can be a resource for your research.

WE C-RAB members share about research. (L-R: Bobby Rogers, Jackie Humphries & Luwana Pettus-Oglesby)

On Saturday, May 6th the West End Community Research Advisory Board (WE C-RAB) hosted a community Stop the Bleed and CPR/AED trainings. “We (the WE C-RAB) had identified the need for this kind of training for the community and were excited to be able to bring this opportunity to Seven Hills Neighborhood Houses community center through our research partners,” said President of the WE C-RAB, Luwana Pettus-Olgesby. The event, called “WE Care to Be Safe”, brought together partnering researchers who have come to the WE C-RAB for feedback, with the Whitney Strong Foundation to provide hands-on life-saving education to the community. Community members were invited directly by WE C-RAB members, as well as through the community center.

Danea Cloyd of the Whitney Strong Foundation demonstrates packing a wound

Pediatric Emergency Medicine Fellow, Cindy Chang, M.D., conducted the Stop the Bleed training with assistance from Michelle Eckerle, M.D. from pediatric emergency medicine and Danea Cloyd from the Whitney Strong Foundation (WSF). The WSF, which is focused on ending gun violence and loss of life, provided tourniquet kits for all participants who completed the training. Dr. Chang had previously come to the WE C-RAB seeking guidance and feedback on her research around conducting the Stop the Bleed with youth. Adam Powell, M.D., pediatric cardiologist, led the CPR and AED training with Drs. Chang and Eckerle assisting. Dr. Powell had come to the WE C-RAB seeking input on a research study involving male high school basketball players and heart health.  

Cindy Chang, M.D. works with WE C-RAB member Vonnie Tawwab on how the tourniquet works

Nearly 50 people were trained, including WE C-RAB members, Seven Hills staff, Woodlawn Parks and Recreation staff and Hughes High School students, among the many community members attending. Each participant was given a Stop the Bleed certificate of completion, a tourniquet kit and a first aid kit, as well as information about participating in research, including tearpads for a sampling of studies. “I work in the ER, so nearly every encounter in that environment is stressful for the families. It was wonderful to be able to interact with the community in a more relaxed environment and give them health information they wanted and seemed to find valuable,” said Dr. Eckerle. Dr. Powell expressed how refreshing it was “to talk to a group so invested and eager in learning about these important skills because they want to support their community. It made for a joyful interaction for me.” The WE C-RAB plans to host 1-2 more community-researcher partnering events this year.

Adam Powell, M.D. presents AED training

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to across the Academic Health Center interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya or learn more here.

Sharon Watkins and Abbey Rowland with the new research board in the CAA lobby

Community Action Agency’s (CAA) Community Engagement Manager, Sharon Watkins, has been a member of CCTST’s Community Partnership Committee for 5 years and has been helping the CCTST reach the community more effectively. It is through her years of service to the CCTST and learning more about the role of research in improving health outcomes in the community that she recently advocated to bring research education and information about research studies to the CAA clientele. “Our community clientele don’t likely know about the importance of research and how they can help,” says Sharon. “I’d like to help connect them with what I’ve been learning because I think it will help all of us.”

The Community Action Agency is county-wide organization that provides a number of services to the Hamilton County area including a home relief program, employment program, mobile food pantry, tax preparation, and Head Start program, among other services. CAA headquarters, located in Bond Hill, also holds a Cincinnati Public Library branch and offers opportunities for the surrounding community to utilize the space. With so many varied services under one roof, Sharon saw the opportunity to help spread the information about the importance of research and research participation to their diverse community.

Julie Wijesooriya and Abbey Rowland outside CAA

With the help of the Center for Clinical and Translational Science and Training’s (CCTST) Research Community Liaison, Julie Wijesooriya, research marketing staff, Jane Howie and Abbey Rowland, and community consultant, Terresa Adams, the CAA now has 4 research study boards/stands featuring research educational materials throughout the CAA building in places where clientele can easily access them and learn more about participating in research. These studies boards will be maintained by the research marketing staff, with a focus on studies that are recruiting the various clientele coming into the building. In addition to the materials, Terresa and Julie have provided some training on the basics of human subject research and research participation so that CAA staff can better guide and inform their clientele about studies. They will provide additional training for more CAA staff in the near future.

Jane Howie and Julie Wijesooriya putting together one of the boards for CAA

This is just the beginning of what both Sharon and Julie see as an opportunity to grow the community understanding of the role of research in improving health outcomes and creating a greater positive connection between community and research. “I am excited for this on-going partnership and tangible way we can connect community with research, and vice versa, for the benefit of all,” says Sharon.

The Community Engagement Core Spring Speaker Series took place on May 4, 2023 via Zoom, with a focus on Newcomers Rights and access-to-care. In addition to the keynote address, “Community-Engaged Newcomer Mental Health Interventions”, with Dr. Jessica Goodkind and community partner, Martin Ndayisenga, the event recognized the 2023 CCTST Community Leaders Institute (CLI) graduates and 2023 Community Health, Partnership Development and Integrating Special Populations (ISP) grant awardees:

2023 Community Health Grant Recipients

Autism and We in partnership with Cincinnati Children’s Hospital: Creating a Safer Cincinnati Community: A Culturally-Responsive Training for First Responders and Autistic Individuals and Their Families

Reach Out Lakota in partnership with Cincinnati Children’s Hospital: Las Vallas Invisibles: Understanding Barriers to Breast Cancer Prevention and Early Detection Behaviors in the Spanish Speaking Community

Cincinnati Health Department in partnership with Cincinnati Children’s Hospital: A Community Health Needs Assessment of Ethiopian Immigrants in Cincinnati and Columbus, Ohio

2023 Partnership Development Grant Recipients

Mill Creek Alliance in partnership with the University of Cincinnati, School of Planning: Mapping the Unseen Hazards and Assets: A Community Engaged Monitoring of the Lower Mill Creek Urban Watershed

Ohio Hands & Voices, The Cincinnati WIC Program in partnership with Cincinnati Children’s Hospital: Access for All - Infant Hearing Diagnosis and Intervention

2023 Integrating Special Populations Grant Recipient

Equitas Health Center in partnership with University of Cincinnati, College of Medicine: Risk Calculation for Breast/Chest Cancer in Transgender Cincinnatians: Providing Affirming Screening

More information about the 2023 CLI graduates can be found here.

Congratulations to all grant awardees!

Drs. Jones, Corley, and Cheng at the Cincinnati Children’s Inaugural Research Symposium

KL2 Scholar, Alexandra Corley, MD, MPH, assistant professor in the CCHMC Division of General and Community Pediatrics, was chosen to present at the Cincinnati Children’s Inaugural Research Symposium on May 5, 2023. Dr. Corley was joined by Academic General Pediatrics Fellow and mentee, Margaret Jones, MD.

Drs. Corley and Jones’s presentation was entitled, “Racial Inequities in Continuity of Care at Pediatric Academic Primary Care Clinics”, highlighting their important work of understanding structural barriers to provider continuity in primary care. Through their research, they found lower instances of continuity among Black patients in local primary care centers, reflecting structural barriers.