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CLOVES Syndrome Community Launches Patient Registry and Advanced Health Data Management System in Collaboration with Backpack Health, a Konica Minolta Service

Powerful Cloud-based App Provides Patients with Tools for Securely Sharing Electronic Health Records with Families, Doctors and Caregivers

Kennebunk, ME (17 November 2020) – CLOVES Syndrome Community, in association with fellow patient advocacy organizations WonderFIL smiles and GoPI3Ks Charity, today announce an innovative partnership with Backpack Health, a Konica Minolta Service, to officially launch the PIK3CA Related Conditions International Patient Registry for individuals with CLOVES and PIK3CA-related overgrowth spectrum (PROS) syndromes. Through this innovative partnership, individuals with CLOVES and PROS can now manage and control access to health records through iOS, Android and web-based tools that enable easy sharing of medical information with healthcare providers and caregivers.

“By partnering with an industry-leading registry provider like Backpack Health, we’re making it fast and efficient for patients and their families to accomplish the difficult yet vital task of updating and communicating complex and ever-changing medical records across diverse teams of healthcare providers,” said Kristen Davis, Executive Director of CLOVES Syndrome Community. Dr. Matthew Silva, Chief Executive Officer of Invicro and Board Member of Konica Minolta Precision Medicine, said “Backpack Health understands the unique challenges within the rare disease community and aims to deliver a user-friendly experience by providing useful tools to help store, analyze and share access to health records in real-time with providers authorized by each patient.”

Using security technologies and industry best-practices for maintaining strict compliance with international medical data privacy regulations, Backpack Health also enables patients to directly contribute to active research and development of new treatments for CLOVES and PROS by sharing aggregated statistical health data stripped of any directly identifying information with researchers. “As a patient-led advocacy organization, we believe in the power of our community to help drive new understandings of these diseases in order to find new treatments for PIK3CA-related conditions,” said Kristen Davis. “A patient registry is a central part of our coordinated research strategy that aims to empower our community as we build a network of scientific researchers. We can now leverage existing knowledge, understand new disease insights and translate basic science into improved patient outcomes,” adds Davis.

Although over 7,000 different rare diseases affect over 30,000,000 individuals in the U.S. alone, the limited number of patients affected globally by CLOVES and PROS presents unique research challenges. For rare diseases like CLOVES and PROS, patient registries are essential in the absence of large patient populations in order to justify new research, track the effectiveness of different interventions through patient reported outcomes and support regulatory approvals of new therapies.

CLOVES stands for Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevi & Scoliosis/Spinal Issues/Seizures. CLOVES Syndrome is a congenital disease caused by a somatic genetic mutation in a gene called PIK3CA. Symptoms vary widely amongst patients but include vascular, skin, spinal and bone abnormalities and overgrowth. Currently, there is no cure and are limited treatment options. PIK3CA-related overgrowth spectrum (PROS) is an umbrella term for rare syndromes characterized by malformations and tissue overgrowth caused by somatic mutations in the PIK3CA gene.


About CLOVES Syndrome Community
CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome. We believe that when patients and their families are informed and supported, they are better equipped to handle their own medical, emotional, and physical needs. CLOVES Syndrome Community does this by cultivating a thriving patient community, convening medical conferences, publishing books for children, and funding medical research. We also bring families together for Betsy’s Camp, an annual opportunity for community, connection, relaxation and fun.

CLOVES Syndrome Community is part of the Chan Zuckerberg Initiative's Rare As One Network — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The Chan Zuckerberg Initiative's Rare As One Project aims to strengthen the efforts of patient-led groups. It will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts. Working in partnership with the rare disease community, the Rare As One Project will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another. No one is more motivated than patients to drive progress against their disease. We're proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions. More information can be found at www.clovessyndrome.org.

About GoPI3Ks Charity
GoPI3Ks (Genetic Overgrowth PI3K Support) is a registered charity based in the UK. Our aim is to support those living with and affected by the rare overgrowth condition PROS. Our support comes in many forms, from offering financial assistance to ease the burden that living with a rare condition can bring, to keeping patients and families up to date with the latest medical research in PROS through our annual newsletter, but also our social media pages. The social media pages offer a place for patients and families alike to connect, share their stories and ease the isolation that many within the rare community can experience. Our family weekend also offers this feeling of connectivity and community between patients and families, as well as the chance to speak with medical experts in the field of PROS during one to one sessions. More recently we have been able to utilize video conference calling to bring together patients, families and medical professionals, which have proved very successful. More information can be found at www.gopi3ks.com.

Working together with CLOVES Syndrome Community and WonderFIL smiles brings together all our knowledge and resources for the common goal of making a difference to the lives of those living with PROS conditions. As the number of those living with PROS is relatively small and spread globally, this collaboration, along with the expertise of Backpack Health, will help bring patients, families, medical professionals and researchers together. The goal of finding more improved and effective treatment will be significantly increased by having the ability to collate and share medical information with researchers on a single and accessible platform.

About WonderFIL smiles
WonderFIL smiles is a global community for those affected by Facial Infiltrating Lipomatosis (FIL), an ultra-rare overgrowth condition affecting one side of the face. We aim to support people with FIL and their families, and to empower them with information, knowledge and connectivity. For more information about FIL, please visit http://www.wonderFILsmiles.com.

Partnering with CLOVES Syndrome Community and GoPI3Ks Charity for this unique opportunity is of great importance for the WonderFIL smiles community as we are made up of a limited number of patients. The shared genetic cause and common objective of improved care and treatment options for our patient population makes this collaboration key. With this patient registry, we can provide a vital source for research that has the potential to make a big impact.

About Backpack Health
Backpack Health, a Konica Minolta Service, builds secure, innovative information tools to help people manage their health journey — including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. The platform also bridges patient connection and medical data gaps offering pharmaceutical sponsors data access to accelerate their drug development research and clinical trials for novel diseases. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks and the advice in the light of recent changes to these frameworks. Learn more at www.backpackhealth.com.

About Konica Minolta
Konica Minolta, Inc. (Konica Minolta) is a global digital technology company with core strengths in imaging and data analysis, optics, materials, and nano-fabrication. Through innovation, Konica Minolta creates products and digital solutions for the betterment of business and society—today and for generations to come. Across its Business Technologies, Healthcare, and Industrial-facing businesses, the company aspires to be an Integral Value Provider that applies the full range of its expertise to offer comprehensive solutions to the customer’s most pressing problems, works with the partners to ensure the solutions are sustainable, anticipates and addresses tomorrow’s issues, and tailors each solution to meet the unique and specific needs of its valued customers. Leveraging these capabilities, Konica Minolta contributes to productivity improvement and workflow change for its customers, and provides leading-edge service solutions in the IoT era. Headquartered in Tokyo and with operations in more than 50 countries, Konica Minolta has more than 43,000 employees serving approximately two million customers in over 150 countries. Konica Minolta is listed on the Tokyo Stock Exchange, (TSE4902). For further information, visit: https://www.konicaminolta.com/.