National Scleroderma Foundation Joins Carebox Network

Now individuals living with scleroderma, caregivers and healthcare professionals have an easy and effective way to search and match to scleroderma clinical trials.

DANVERS, Mass. & RALEIGH, N.C., June 14, 2023 (Newswire.com) – Carebox, a leading provider of clinical trial matching solutions, and the National Scleroderma Foundation – a 501(c)(3) charitable organization founded in 1998 to advance medical research, promote disease awareness, and provide support and education to people with scleroderma – today announced the launch of a Carebox Connect experience optimized for scleroderma clinical trials.

The new web application gives individuals living with scleroderma, caregivers and healthcare professionals an easy and effective way to search and match to scleroderma clinical trials.

Individuals can complete a short six-question questionnaire about their condition and then instantly see which clinical trials are potentially relevant for them. They can then get connected to a trial site for next steps.

The Carebox Connect trial database is synchronized daily with the ClinicalTrials.gov clinical trial data maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). Applying its human-supervised AI, Carebox converts the unstructured text in ClinicalTrials.gov that describes eligibility criteria for enrollment into a searchable index of clinical criteria for matching with patient characteristics.

For more advanced users, full search and filtering capabilities are available. Filters can be saved for future use. Furthermore, based on those saved filters, users can subscribe to receive Carebox Connect notifications in their email inbox whenever new trials open (or new sites open) in a defined distance radius from where they are located.

Access to the new web application is available from the National Scleroderma Foundation website.

“Participation in the Carebox Connect Network is core to our mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks,” said Mary J Wheatley, adding that “Carebox’s questionnaire and matching technology quickly identifies which trials are potentially relevant for each person’s circumstance.”

“A key aspect of the Carebox Connect Network is its ability to create optimized experiences that align with specific needs of the patient populations served by each of our partners,” Brian Weiss, Carebox CEO, said. “We are proud to be able to support the incredibly important work of the National Scleroderma Foundation and are committed to continuing to expand our network of partners to reach as many patients as possible.”

About the National Scleroderma Foundation

A relentless force in finding a cure and improving the lives of people affected by scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks. Supported by a network of thousands of individuals across the United States, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever. National Scleroderma Foundation has been recognized for its commitment to financial transparency and reporting with six consecutive years of four-star ratings by Charity Navigator, and a platinum seal of approval by Candid. For more information, visit scleroderma.org.

About Carebox

Carebox connects patients and physicians seeking treatment options with clinical trials. For individuals living with scleroderma and their families, access to information about the newest and most advanced treatment options is obscured and frustrating to find. For pharma companies, clinical trial recruitment is the primary bottleneck in the $100B+ drug development market now being reshaped by precision medicine treatment specificity, new trial models, diversity requirements, and digital health consumer expectations. Carebox is at the forefront of addressing these challenges for individuals living with scleroderma and their families, as well as for the ecosystem of companies involved in sponsoring, running, and recruiting for clinical trials. For more information, visit careboxhealth.com.

About Carebox Connect

The Carebox Connect cloud platform digitizes Carebox’s two decades of experience in navigating over one million patients seeking clinical trial options. It enables trial sponsors of all sizes to educate, engage, navigate, match, qualify, refer, and enroll patients in their clinical trials. Pharma trial sponsors, hospital research centers, and patient advocacy groups use Carebox Connect to present their clinical trial portfolios to the public, optimize trial recruitment, and enhance participant diversity in support of ongoing clinical research.

About The Carebox Connect Network

In addition to customer-branded Carebox Connect solutions for trials sponsors and sites, the Carebox Connect Network brings the power of the platform to patients, families, and caregivers via a rapidly growing network of tens of patient advocacy groups and physician associations. Carebox runs co-branded and branded web applications and/or clinical trial navigation services on behalf of its Carebox Connect Network partners.

Source: Carebox

June is Scleroderma Awareness Month! All month long, Lets Talk About Scleroderma and elevate the conversation supporting those battling this chronic disease. To join us all month long, visit scleroderma.org/tealtalk 

#TealTalk

For anyone who has lost a loved one or friend in military service to our country, we stand by you today and every day. Thank you to all who serve our country and support our community every day.

In observance of the Memorial Day holiday, the National Scleroderma Foundation offices will be closed on Monday, May 29. 

Danvers, Massachusetts. May 9, 2023

The Board of Directors of the National Scleroderma Foundation is pleased to congratulate Carol Feghali-Bostwick, Ph.D. for her receipt of the Translational Science Award from the Association for Clinical and Translational Science (ACTS).

Dr. Feghali-Bostwick, along with colleague ReJoyce Green, Ph.D., received the award on April 18 at the Translational Science Conference in Washington, DC. Dr. Feghali-Bostwick was recognized “for contributing to the diversity and inclusiveness of the translational workforce.” ACTS President Linda B. Cottler, Ph.D. stated, “The ACTS awards recognize talented investigators who translate their findings ultimately from the bench to the community. Awardees are in all phases of studies and disciplines throughout the workforce, which includes investigators, trainees, educators, and research teams as well as the advancement of diversity, inclusion, and health equity.”

Carol Feghali-Bostwick, Ph.D., was recruited to the Medical University of South Carolina Division of Rheumatology and Immunology in 2013 as the SmartState and Kitty Trask Holt Endowed Chair and Professor of Medicine. Dr. Feghali-Bostwick earned her Ph.D. in Microbiology and Immunology at Tulane University in New Orleans, Louisiana. At MUSC, Dr. Feghali-Bostwick leads a team of clinical and basic scientists focusing on the pathogenic mechanisms underlying fibrosis whose goal is to identify novel targets for therapy and develop new anti-fibrotic strategies for scleroderma/systemic sclerosis, idiopathic pulmonary fibrosis, and other fibrosing conditions. Dr. Feghali-Bostwick also contributes to the mentoring of young physicians and academic scientists. She serves as Vice Chair of the Board of Directors for the National Scleroderma Foundation and is also Chair of the Research Committee and liaison to the Medical and Scientific Advisory Committee.

To learn more about Dr. Feghali-Bostwick and this high honor, please visit https://www.eurekalert.org/news-releases/988069.

About the National Scleroderma Foundation

A relentless force in finding a cure and improving the lives of people affected by scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks. Supported by a network of thousands of individuals across the United States, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever. National Scleroderma Foundation has been recognized for its commitment to financial transparency and reporting with six consecutive years of four-star ratings by Charity Navigator, and a platinum seal of approval  by Candid. For more information, visit scleroderma.org.

The World Health Organization (WHO) announced Friday that it was ending its declaration of Covid-19 as a global health emergency. The White House has announced that the US public health emergency will end on May 11. While it is encouraging to see a return to many “normal” activities of daily living. However, it is important to note that the virus continues to spread and evolve. It is important for those living with scleroderma or a related condition to continue to maintain a reasonable level of caution. This includes regular handwashing, wearing a mask in crowded public spaces, and following CDC guidance for people who are moderately or severely immunocompromised.

You can learn more about the Foundation Medical and Scientific Advisory Board recommendations at https://scleroderma.org/health-and-safety/.

Scleroderma experts are providing important Continuing Medical Education (CME) at the Congress of Clinical Rheumatology in Destin, Florida today, May 5! Two sessions focused on the Lung in Scleroderma are being jointly provided by Postgraduate Institute for Medicine and National Scleroderma Foundation.

Dr. Virginia Steen will present Systemic Sclerosis Associated Pulmonary Arterial Hypertension, and Dr. Laura Hummers will be presenting on Systemic Sclerosis Associated Interstitial Lung Disease. Both faculty also serve on the Foundation’s Medical and Scientific Advisory Board, which Dr. Steen has chaired for the last six years.  

Learn more about the Foundation’s Continuing Education Programs and claim your CME here.

For more information about the Congress of Clinical Rheumatology, please visit the website at https://www.ccrheumatology.com/.

In support of improving patient care, this activity has been planned and implemented by the Postgraduate Institute for Medicine and National Scleroderma Foundation.

Postgraduate Institute for Medicine is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

PIM designates this live activity for a maximum of 1 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. The maximum number of hours awarded for this Continuing Nursing Education activity is 1 contact hours.

One of our primary objectives this year has been to ensure access to programs and services for everyone in their scleroderma community, regardless of where they are geographically, or in their diagnostic journey. To that end, the Foundation has committed to having a presence in every state, and we are actively expanding our chapter network to support this goal.  

My colleague, Jess Haas Gréus and I had the opportunity to visit constituents on the west coast last week, and I’m happy to share some of the highlights from my time.  

While in San Diego, I had the opportunity to meet with a long-time donor who gives in memory of a much-beloved family member. I was so inspired by this new connection, and hearing this family’s story and connection to scleroderma, but also making a new friend who welcomed me with open arms.  

I also got to catch up with a long-time friend and colleague at UCSD to learn about their clinical trial capabilities and work.   

I also got to catch up with a long-time friend and colleague at UCSD to learn about their clinical trial capabilities and work. You can learn more at https://health.ucsd.edu/care/clinical-trials/

I travelled out to Redlands, California to meet with another colleague in rheumatology at Loma Linda, one of our research and treatment centers, to gain a better understanding of how people affected by scleroderma in the inland empire can access care.  

>> Did you know we have FIVE National Scleroderma Foundation Research and Treatment Centers in California? You can learn more at https://scleroderma.org/find-a-treatment-center/

In Los Angeles, I met with one of our long-term research volunteers who is a leader in the field to learn how we can better support the research community and foster more collaboration among scleroderma research and treatment centers.  

One of my favorite things to do while visiting LA is to walk along the oceanfront walkway in Santa Monica. The weather was perfect, and I had blue skies and plenty of squirrel sightings along the way! I may or may not have swung by the Third Street Promenade on my way back…  

I also had the opportunity to meet with a fellow @CHIEF member, and hear about all the wonderful things she is up to!  

One of our Patient Advisory Board Co-Chairs lives out west as well, and hosted me for a fabulous dinner under the balmy, starry skies of Los Angeles. What a treat!  

While I was down south, Jess was visiting members in Northern California.  While there she met with a family whose daughter (age 12) is living with scleroderma – they laughed, planned, and enjoyed each other’s company in the beautiful weather. Jess also met with a gentleman who lost his mother to scleroderma – to hear what the journey/treatment plan for someone with this disease over 20+ years ago was humbling for her. Lastly, she had the opportunity to learn more about the journey of a patient who successfully went through a stem cell transplant.

Jess and I then drove out to Visalia, California to join the sisters of Beta Sigma Phi for their annual meeting. This year, the National Scleroderma Foundation celebrates its 25th anniversary. And the sisters of Beta Sigma Phi have been our philanthropic partners since the very beginning, donating more than $700,000 in the last 25 years to support our mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks. 

We donned our fancy hats, and enjoyed a wonderful time of fellowship and community with these wonderful women who continue to support the important work we do.  

On Sunday, I had an opportunity after the conference to drive out to Sequoia National Park, which was breathtaking. Jess and I got some time to reflect on our visits while in the great state of California, and we were both energized by the community and the warm welcome, and look forward to being back again soon, and providing more programs and services for our local chapter there.  

If you have thoughts or ideas about how we can best serve you, please don’t hesitate to share. You can email at CEO@scleroderma.org.    

Happy National Volunteer Week! We have the best volunteers who selflessly support our mission work by holding leadership positions on our Chapter Advisory Councils, National Board of Directors, Medical & Scientific Board, Patient Advisory Board, plan education and fundraising events such as Stepping Out to Cure Scleroderma, lead support groups, and advocate for scleroderma both nationally and locally. We are grateful to ALL our volunteers – thank you! 

Research is one of the three main pillars of the National Scleroderma Foundation. Over the last #25years, the National Scleroderma Foundation has committed over $30 million to research efforts through our Peer-Reviewed Research Grant Program. Until there is a cure, we will keep fighting. To learn more, visit https://scleroderma.org/scleroderma-research-grant-program/

Throughout the months of April, May and June, we will be sharing videos highlighting a few of our researchers. Stay tuned for more!