Adrian Kielhorn’s Post

Tackling health disparities in rare diseases on the path to greater clinical trial diversity - start with rethinking measures of diversity Yesterday I had the honor to present at the Guthy Jackson Charitable Foundation pre-ECTRIMS findings and insights of two health equities studies. Many of my colleagues and hundreds of patients made this research possible. A key finding is that we need to think “outside the box” if we want to measure the diversity of patients included in research. Achieving greater trial diversity will require investments. And these will be hard to get unless we can measure progress. Need an idea? Try capturing race using the US OMB standard question on race and offering patients the choice to assign percentage weight in case they select more than one category.

Tackling health disparities in rare diseases on the path to greater clinical trial diversity - start with rethinking measures of diversity Yesterday I had the honor to present at the Guthy Jackson Charitable Foundation pre-ECTRIMS findings and insights of two health equities studies. Many of my colleagues and hundreds of patients made this research possible. A key finding is that we need to think “outside the box” if we want to measure the diversity of patients included in research. Achieving greater trial diversity will require investments. And these will be hard to get unless we can measure progress. Need an idea? Try capturing race using the US OMB standard question on race and offering patients the choice to assign percentage weight in case they select more than one category.

For #PhilanthropyThursday we are highlighting Veterans Health Foundation For more than 90 years, VA clinicians have been improving the lives of Veterans and all Americans through health care discovery and innovation. VA Research is unique because of its focus on health and wellness issues that affect Veterans. Nested within the Veterans Health Administration—the nation’s largest health care system—VA Research is viewed by many experts as a model for rigorous, impactful research. Veterans Health Foundation and their partners have been able to bring fund 283 research projects, 5710 surgeries, 80 transplants, and more. Today especially, supporting veteran charities fosters a sense of patriotism and community. It encourages people to reflect on the true meaning of the holiday and the values of freedom, sacrifice, and unity. This can lead to a stronger, more connected community! Donating to veteran charities helps raise awareness about the ongoing needs of veterans. Many people are not fully aware of the struggles that veterans face after their service. By supporting charities like Veterans Health Foundation, we can help bring these issues to light and promote broader support and understanding. Read more about this awesome organization here: https://lnkd.in/gRFzmvnr

I am excited to share that I now #belong to a non-profit organization called Consilium Scientific in a Thought Leadership capacity. CS believes that patients deserve better quality clinical research. One initiative, called TranspariMED is working to end evidence distortion in medicine. It is based on the sentiment that the development of life-saving medicines cannot proceed efficiently if half of clinical trial never make their results public, leading to large knowledge gaps. What do we want? TRANSPARENCY! When do we want it? YESTERDAY! TranspariMED has already won big victories, by convincing top European Universities and leading U.S. companies to make all their drug trial results public and to publish their missing trial results. They convinced the UK to put into place the world's first national transparency system to make all future UK trial results public. If this particular initiative speaks to you, could you donate a Starbuck's coffee worth of funds? I know $5 doesn't sound like much, but when my posts receive between 500-1000 impressions it really adds up! Your donations would help us work on proposals to help develop and support the TranspariMED platform in the U.S. building on its success in the UK. Check it out using the link below: https://lnkd.in/e8eFScZ5 Thanks in advance for your time reading this message, donating, and/or sharing! #healthcare #patientoutcomes #clinicaltransparency #tallskimcaramelmacchiato

Last week was our 7th Annual BIG GIVE and we went LIVE each day and dove into the topics of our Learn - Treat - Cure initiative for our science and research strategy. In one segment, we were joined by Carrie Howell, Executive Director of Dup15q Alliance, and Jackie Vanderhoof, Dup15q Alliance Board Member, Science Committee Co-Chair, and mom to four-year-old Fiona who has Dup15q syndrome. They discussed the role of the Alliance in Clinical Trials and the Importance of Data on Individuals with Dup15q syndrome. "There is a lot of hesitancy on the parent's part in needing to give you medical records. But the most important thing for researchers is that when researchers get the information out it HAS to be deidentified......I promise you that if there is any way that helps parents and sways your fears of putting any information into any of our databases (LADDER Learning Network or Ciitizen). It absolutely comes out deidentified." -Jackie Vanderhoof We continue to reach our goal of $30,000! There is still time to make a gift: https://dup15q.org/2024BG! #Dup15qResearch #LearnTreatCure #Believe #Strategy #ClinicalTrials #Data #DeIdentified #Fundraising #Research 

Please join us in raising awareness of #MultipleSclerosis this #WorldMSDay! Raising awareness on World MS Day is vital for several reasons: 1. Education and Understanding Clarifying MS: Helps people understand what multiple sclerosis (MS) is and dispels myths. Early Detection: Educates about symptoms, leading to earlier diagnosis and treatment. 2. Support and Community Building Connections: Provides a platform for patients, families, and caregivers to connect and support each other. Reducing Stigma: Promotes empathy and inclusivity by reducing misconceptions about MS. 3. Advocacy and Policy Promoting Research: Encourages funding for research, leading to better treatments and potential cures. Influencing Policy: Helps advocate for improved healthcare services and access to treatments. 4. Fundraising and Resources Financial Support: Boosts fundraising efforts essential for research and patient services. Resource Allocation: Highlights the need for better resources and support systems. 5. Empowerment Inspiring Stories: Sharing personal stories empowers others with MS and raises public awareness. Media Attention: Brings MS issues into the public eye, fostering global attention and action. In summary, World MS Day helps educate, support, advocate, fundraise, and empower, ultimately improving the lives of those affected by MS.

Over the past few months, we’ve been hard at work on two NIHR (National Institute for Health and Care Research) FAST grants that were awarded to us in the spring. The first of these is investigating the stability requirements for a portable OCT unit like ours. Once again, we’re teaming up with the Macular Society, only this time we’ll be carrying out eye-tracking measurements on a wide range of patients. This will establish the reliability with which the most popular form factor that we've previously trialed can be used by people between the ages of 60 and 90. Our first focus group is at the end of this month, so watch this space to see how it goes! The second grant is looking at how remote monitoring for wet age-related macular degeneration will affect patient outcomes. Our health economists are building a patient-level simulation to examine the impact of optimising treatment schedules for different stages of the disease. Results are expected later this year. #maculardegeneration #startup #lifesciences #innovation #healthtech #medtech #charity #collaboration #siloton #oct #opticalcoherencetomography #usabilitytesting #grants

Social data is a proven and valuable source of information about patients’ lived experience of conditions, care, symptoms, diagnosis, and treatment. To improve their lives, we use the data to generate patient-centric insight using our Million Minds Insights Platform to access over 300M social data points. It has enabled us to: - Identify insights to help the Alzheimer's Society improve support for patients’ loved ones and carers - Work with Bayer to improve patient clinical trial design (PP-MACS-GB-0096) - Inform fibromyalgia care and education with Anushka Soni of University of Oxford, NDORMS You can visit our case study page to find out more about these projects, and other ways we have used social data to improve patient lives here: https://lnkd.in/eXvugQyp . Contact us at [email protected] to find out more about social data and working with us, and follow us on LinkedIn to keep up to date with our work at White Swan (Charity) . #socialdata #patientcentric #insight #healthcare

Parkinson's disease is the fastest growing and the second most prevalent neurological condition, affecting an estimated 10 million people worldwide. Today, on World Parkinson's Day, Linus Health is raising awareness and showing support for the millions of individuals living with Parkinson's disease worldwide. Parkinson's affects not only those diagnosed but also their families, caregivers, and communities. At Linus Health, we’re providing new ways for clinicians and researchers to track and detect cognitive decline and other neurodegenerative diseases like Parkinson’s without the invasiveness or costs of traditional testing. It's crucial to continue advocating for earlier detection, better research, treatment options, and support systems for everyone impacted by this neurological condition. April is Parkinson’s Awareness Month. Learn more about how you can get involved and raise awareness:  https://www.parkinson.org/ I #WorldParkinsonsDay #ParkinsonsAwarenessMonth #ParkinsonsDisease #ParkinsonsAwareness #ParkinsonsResearch

Results from "The Final 10%" CF Survey reveal many people have participated in clinical trials in the past and even more are interested in participating in the future. We were particularly moved by 66% of respondents citing the “desire to help the CF community even without a direct benefit” as a main motivation. Talk about altruism! Forever inspired by the courage and solidarity of the amazing #cysticfibrosis community 🙌🏼 Read the full report >> https://bit.ly/3IBwJYf #raredisease #CFresearch #clinicaltrials