VISION Registry Brochure

Approved by Sterling IRB, IRB ID: 8886

“ For a rare disease that affects only six people per one million in the United States, developing clinically significant data from a large patient population has been a longstanding obstacle for researchers and has denied the ocular melanoma community the recent treatment breakthroughs that have been achieved in cutaneous melanoma. CURE OM’s VISION Registry represents a historic opportunity for research collaboration to accelerate the pace of scientific discovery to benefit patients. ”

“ No one should have to face ocular melanoma alone, and participating in the VISION Registry unites courageous melanoma patients and caregivers around the world as we work together towards our common goal: to CURE OM. I am honored to be part of this exciting cutting-edge registry. ”

BUTCH EWING, OM PATIENT AND VISION REGISTRY PARTICIPANT

Patients, caregivers, researchers and clinicians around the world are uniting to advance ocular melanoma (OM) research, inspire hope and change the course of OM forever. VISION Registry

“ My son Gabriel was diagnosed with ocular melanoma at the age of seventeen. It was a time of shock and fear for our entire family. This VISION Registry is so crucial in the journey to finding a cure. To both capture the true number of people who have ocular melanoma, as well as all the important details of their lives, will be instrumental in helping our scientists find the cause of this very rare cancer. Once we learn the cause, not only could it prevent others from contracting this cancer, it is my belief that a cure will shortly be found. ” KIM ROY, OM CAREGIVER AND VISION REGISTRY PARTICIPANT

 MARLANA ORLOFF, MD, FOUNDING MEMBER OF THE CURE OM PATIENT REGISTRY STEERING COMMITTEE

“ Alongside dedicated researchers and physicians working towards new treatment breakthroughs, OM patients and caregivers have always been vital partners in identifying priorities and advancing our understanding of this disease. After witnessing their commitment to the development and launch of the VISION Registry, I have never been more confident that OM patients and those who love them will lead us to a cure. ” SARA SELIG, MD, MPH, CO-FOUNDER AND DIRECTOR OF THE CURE OM INITIATIVE

MELANOMA RESEARCH FOUNDATION 1420 K Street, NW, 7th Floor Washington, DC 20005 T 202.347.9675 or 1.800.MRF.1290 F 202.347.9678

CURE OM (Community United for Research and Education of Ocular Melanoma)

E info@melanoma.org www.melanoma.org

An initiative of the Melanoma Research Foundation to enhance awareness and education about ocular melanoma (OM). CURE OM works to accelerate research to find new and effective treatments for the disease.

www.facebook.com/cureom www.twitter.com/MRFCureOM www.instagram.com/CureMelanoma

Approved by Sterling IRB, IRB ID: 8886

Why Join the VISION Registry?

About the MRF and CURE OM

Who Should Join?

1 The VISION Registry is a historic opportunity t o unite OM patients and caregivers with researchers and physicians to reveal disease patterns and potential causes, and accelerate progress towards new treatments and a cure for OM. 2 Joining the VISION Registry will help improve patient experiences and outcomes for the thousands of families around the world impacted by OM each year. 3 The VISION Registry empowers OM patients and caregivers to rapidly advance OM research and bring our community one step closer to a cure. 4 Registry data is stored on a secure cloud platform that meets all US and European data protection regulations, with regular backups to secure off-site storage. To maintain patient confidentiality, all data is de-identified before authorized research collaborators are granted access.

All ocular melanoma patients and caregivers are eligible and encouraged to participate. Participation is free and entirely voluntary, all data is securely stored with state-of-the-art encryption, and the patient (or their legal representative) always determines the amount of information to share. Joining the VISION Registry directly supports the latest research that will lead to scientific breakthroughs and treatment advances.

The Melanoma Research Foundation (MRF) is the largest independent organization devoted to melanoma. Committed to the support of medical research in finding effective treatments and eventually a cure for all forms of melanoma, the MRF also educates patients and physicians about detection, diagnosis and the treatment of melanoma. The CURE Ocular Melanoma (CURE OM) initiative was founded in 2011 by an OM patient and caregiver to increase awareness, education and research funding for ocular melanoma. To date, the MRF’s CURE OM initiative has funded over $2.1 million in ocular melanoma research and pioneered international collaborations, innovative patient support resources and groundbreaking scientific initiatives like the VISION Registry.

How It Works To begin, go to www.visionregistry.org and follow the links to register. After registering, participants will be asked to complete several personalized surveys to document their experience through OM diagnosis and treatment, as well as additional information on topics such as: Socio-demographics

About the VISION Registry

Personal and Medical Profile

VISION Registrants from all over the USA

Occupational History and Exposures

Primary Diagnosis and Treatment

Recurrence and Metastasis (if applicable)

General Well-being and Quality of Life

Depending on the length and complexity of an individual’s history with OM, the surveys may take some time to complete. Participants are encouraged to have their medical records and other relevant documentation on hand to complete the surveys, and it may be helpful to have a partner or caregiver to help you remember dates, locations and other details. Participants can save their progress and continue the surveys at a future time. However, survey completion is essential to utilize the data for research and make a difference. After completing the initial surveys, participants are encouraged to regularly revisit their records to provide important updates such as changes in their environment; recurrence or spread; surveillance; treatments and outcomes; or quality of life. Having an accurate, comprehensive picture of the participant’s experience is essential to advance understanding and knowledge of OM.

Built in collaboration with patients, researchers and clinicians, the Virtual Information System to Improve Outcomes and Networks (VISION) Registry is a patient-reported, patient-powered registry for ocular melanoma patients, caregivers, researchers and clinicians. A registry is an online database hosted in the internet cloud that securely collects, stores, monitors, analyzes and shares data for research purposes. In contrast to the researcher- entered information found in a traditional database, the VISION Registry is particularly effective because it is driven by patients and caregivers who directly input data to create a comprehensive picture of their OM experience over time. Furthermore, to support ease of use and overall experience while advancing research, unique registry features and tools have been specifically developed to support participants and bring together the international community.

Kim Roy MASSACHUSETTS

Lindsay Zubeck COLORADO

Butch Ewing TEXAS

Chad Kimbler NEVADA

“ Participating in a registry empowers patients to help advance researchers on our disease. While the questionnaire process may be daunting the benefit is nearly invaluable. As a metastatic patient, I am ecstatic knowing this information will assist in further treatments and cure. ”

The information you share could unlock the next treatment breakthrough!

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