Use our new friend, Spot, to help children check their skin for new or unusual spot or lesions. This tool will help young people become aware of their skin and aware of melanoma.
VISION Registry Data Report
2 0 2 2
melanoma.org/VISIONplatform
Pictured (L to R): Dr. Bertil Damato, Dr. Sara Selig, Dr. Marlana Orloff and Dr. Richard Carvajal.
T hank you for your interest in the first-ever VISION Registry Data Report highlighting the power of the VISION Registry’s inaugural year. On behalf of the Melanoma Research Foundation’s (MRF) CURE OM team, the VISION Steering Committee and our close collaborators, I would like to thank ocular melanoma (OM) patients and their loved ones worldwide for their years of patience, dedication and support towards making the VISION Registry a reality. For years to come, VISION will benefit the entire OM community by deepening our understanding of the disease as well as providing opportunities for information exchange and community connection. We are excited and proud to offer a cutting-edge registry that captures the patient and caregiver voice and centers their experience and knowledge to advance research. Furthermore, VISION will continue to educate the OM community on clinical trials and other research initiatives and grow to enhance research and connection in the OM community. At its core, VISION seeks to connect and empower the OM community and support the best patient care, quality of life and improved patient outcomes through collaboration and centralization of data and resources. This is foundational to the vision set forth by co-founder, OM patient, and my husband, Dr. Gregg Stracks, for the CURE OM initiative. The VISION Registry was co-developed by OM patients, caregivers, researchers and clinicians and is a tool that the entire OM community can access globally anywhere there is internet. Participants sign an online consent form and provide their own personal and medical information into the database. Patient-entered data is stored on a secure online server hosted by Global Vision Technologies (GVT), a registry platform provider that upholds U.S. and European data protection regulations. Dear VISION Community,
The VISION Registry is reviewed and monitored by an Institutional Review Board (IRB) to protect the rights and welfare of research participants. Because the VISION Registry is fundamentally conducting a natural history study that investigates the lifetime of the disease, it will be expected to run for many years and have continual updates that support research and technological enhancements over time. While we have come a long way, we still have a long journey ahead to uncover answers, develop treatments and find a cure. I feel honored to be the principal investigator of the Registry and to work with such an innovative, creative and dedicated community. Furthermore, I look forward to continuing together on this pathway of discovery to advance patient care and find a cure. In closing, I would like to thank the amazing team working to support VISION including the patients and caregivers who are actively participating and providing input and feedback, the VISION Steering Committee, our funders, and the dedicated MRF CURE OM team. I would also like to thank Ms. Jacqueline Kraska, CURE OM Research and Data Officer, for her efforts to build the Registry and compile the data presented in this report as well as the Global Vision Technologies team for their contributions in building the Registry and helping us realize our mission. T hank you for being a part of our vision — working together we will CURE OM because progress is power! With Gratitude and Hope,
Sara Selig, MD, MPH Co-Founder and Director, CURE OM
2022 VISION Registry Data Report
1
We dedicate this VISION Registry Data Report to all ocular melanoma (OM) patients and those who love and support them, including current OM survivors and those we have lost too soon. Additionally, we dedicate this report to the researchers, clinicians and professionals working to advance treatment options for the OM community. Working together we will cure ocular melanoma.
2022 VISION Registry Data Report
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Table of Contents
4 6
I. Patient Engagement
II. Socio-Demographics
12 22 35 39 42 53 54
III. Ocular Melanoma Linkages
IV. Primary Ocular Melanoma
V. Primary Tumor Surveillance
VI. Recurrence of Primary Tumor
VII. Metastasis
VIII. Patient Quality of Life Survey
IX. Appendix
2022 VISION Registry Data Report
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I. Patient Engagement The Patient Engagement section provides an overview of patients who are participating in VISION and those who are interested in additional research participation. This section informs the reader how many patients and their Legally Authorized Representatives (LARs) have consented to take part in VISION; how many participants have completed the Personal Profile and Preferences Survey, which provides the patient’s personal details and their preferences for engagement in VISION; and how many surveys have been completed by participants. This section also shows interest from participants to participate in VISION’s partner registry known as the Prospective Ocular Melanoma Natural History (OMNi), as well as other ocular melanoma (OM) clinical trials and research efforts.
VISION Participants the consent form 327 registered and signed
and preferences 174
completed personal profile
surveys 123
completed
Patients’ Preferences for Research Engagement
Would you like to be informed of research efforts related to OM?
Has the patient been enrolled in the collaborating academic registry study called Prospective Ocular Melanoma Natural History (OMNi)?
Would you like to be informed of clinical trials related to OM?
91% 5%
76%
YES
12%
2%
75%
NO
12%
7%
20%
UNSURE
2022 VISION Registry Data Report
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I. Patient Engagement
Patients’ Preferences for Research Engagement (continued)
PATIENT VOICE “It is astonishing to me that the secrets of this cancer are taking so long to unravel. Our very small numbers are certainly to blame so we should all summon up the courage to stand up and be counted. Let’s stand together, work together and hope to live. Please put your heart into telling your story. Take a moment, however long it takes, to record the history of your disease in the VISION Registry. It will make a difference.” — VISION Participant in Canada
Would you be interested in being a patient representative for OM research initiatives, including this registry?
Would the patient be interested in participating in studies that focus on hereditary causes of OM?
82%
70%
7%
8%
11%
22%
2022 VISION Registry Data Report
5
II. Socio-Demographics The Socio-Demographics section provides an overview of the demographics of the patients whose information has been shared with the registry. The data about the ocular melanoma (OM) patient population covers characteristics such as age, sex at birth, race and ethnicity, and health insurance coverage.
What was the patient’s age at time of diagnosis?
32%
27%
Patient Profile What is the patient’s primary OM diagnosis?
17%
17%
3% Uveal – Iris
2% Unknown
88% Uveal – Choroidal
7% Uveal – Ciliary Body
5%
1%
1%
20–29
50–59 40–49 30–39
80–89 70–79 60–69
What was the patient’s sex at birth?
70% Female
30% Male
2022 VISION Registry Data Report
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II. Socio-Demographics
Year of Primary Diagnosis When was the official diagnosis made?
5%
Prior to 2000
13%
2000–2009
55%
2010–2019
27%
2020–present
What is the patient’s race and ethnicity? (Participants asked to select all applicable responses)
1% 1% 2% 95% 1%
AMERICAN INDIAN/ ALASKA NATIVE
ASIAN
HISPANIC OR LATINO
WHITE
OTHER
American Indian/Alaska Native: A person having origins in any of the original peoples of North and South America (including Central America), and who maintains tribal affiliation or community attachment. Asian: A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent, including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. Hispanic or Latino: A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. White: A person having origins in any of the original peoples of Europe, the Middle East, or North Africa. Other: Did not specify.
2022 VISION Registry Data Report
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II. Socio-Demographics
Patient Profile What is the annual gross income for the household in which the patient lives?
Does the patient have health insurance or any other kind of health care plan?
2% No
1% Prefer not to answer
14%
Less Than $50,000 (USD)
28%
97% Yes
The 97% of patients who responded “Yes” reported:
$50,000–$99,000
11%
21%
Medicare
$100,000–$149,999
12%
1%
Medicaid
$150,000–$199,999
Military health care (Tricare/VA, Champ-VA)
3%
9%
$200,000–$249,999
Other govt. insurance
2%
14%
$250,000 +
Private health insurance
68%
11%
Other For 5% of patients who responded “Other” they reported: BC Health Health Share, Medical Service Plan BC
5%
Prefer Not to Answer
1%
Left Blank
2022 VISION Registry Data Report
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II. Socio-Demographics
Were there any financial considerations that made it difficult for the patient to receive the medical care they wanted?
What is the highest level of education the patient completed?
3%
Secondary (6–12)
7%
Business, Trade, or Vocational School
8%
College, but Did Not Finish
1%
39%
Graduated From a College or University
16% Yes
83% No
1% Prefer not to answer
39%
Post-graduate
4%
Prefer Not to Answer
“ “ “
For the 16% of patients who answered “Yes” to experiencing financial considerations that made it difficult to receive medical care, they explained that their hardships consisted of various reasons, especially highlighting difficulties experienced in being able to afford preferred treatments and expenses related to traveling to receive care. A few examples patients gave are outlined on the right.
Canada was not offering the treatment options that were available to metastatic patients in the United States.” Lack of treatment options available locally, insurance denials for scans and treatment.” Travel and fuel plus hotel and Uber fees. Also cost of prescribed medication co-payments.”
2022 VISION Registry Data Report
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II. Socio-Demographics
Patient Profile What country does the patient live in?
89%
5% 2% 1% 1% 1% 1%
United States
Canada
Australia
Ireland
Mexico
Norway
United Kingdom
The 89% of patients who reside in the United States reported living in following states:
Alabama 2%
Iowa 1%
7%
Florida
Alaska 2%
4%
2%
Georgia
Kansas
Idaho 1%
10%
1%
California
Kentucky
Illinois 1%
Colorado
4%
2%
Louisiana
Connecticut
4%
Maine 1%
Indiana 2%
VISION Registry was launched in the US in May 2021. International launch was August 2021.
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II. Socio-Demographics
PATIENT VOICE “As well as being my husband’s caregiver, I have become an advocate for Irish patients with ocular melanoma and their families. Unfortunately, Ireland may have the highest proportion of ocular melanoma patients per population. But no one knows why! My husband and I hope that people all over the world will participate in the CURE OM initiative’s VISION Registry, to provide an internationally based collection of information as a resource that can be used by researchers to answer the yet unanswered questions about ocular melanoma that will lead to finding a cure.” — VISION Participant in Ireland
The 89% of patients who reside in the United States reported living in following states (continued)
North Carolina 7%
Missouri 2%
Maryland 1%
1%
1%
South Carolina
Washington
Massachusetts 3%
Nevada 1%
2%
1%
1%
Ohio
South Dakota
Wisconsin
Michigan 1%
New Hampshire 1%
1%
2%
Oklahoma
Tennessee
Minnesota 2%
New Jersey 3%
2%
6%
Oregon
Texas
Pennsylvania
Virginia
Mississippi 1%
New York 10%
5%
3%
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages The Ocular Melanoma Linkages section provides insight into possible associations with OM for the patients whose information and experiences have been shared with VISION. Potential linkages to OM include information on medical history, family history of OM and environmental exposures.
1% Unknown
17% No
Family History Does the patient have a family history of OM?*
Does the patient have a family history of other cancers?
82% Yes
93%
The 82% of patients who responded “Yes” reported:
Basal Cell Carcinoma 8%
Mesothelioma 2%
Breast Cancer 22%
Neuroendocrine Cancer 1%
Cholangiocarcinoma 1%
Ovarian Cancer 5%
Colorectal Cancer 13%
3%
4%
Prostate Cancer 0%
Cutaneous Melanoma 8%
Renal Cell Carcinoma 2%
Yes
No
Unknown
Lung Cancer 10%
Sarcoma 1%
Meningioma 0%
Other 27%
* Please note: The questions in this section are answered from the time point of the initial diagnosis of primary ocular melanoma.
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III. Ocular Melanoma Linkages
75% No
Personal and Medical Profile Does the patient have a personal history of other cancers?
Does the patient have a known cancer predisposition syndrome?
25% Yes
50%
47%
The 25% of patients who responded “Yes” reported:
Basal Cell Carcinoma 44%
Prostate Cancer 3%
Breast Cancer 9%
Renal Cell Carcinoma 3%
3%
Cholangiocarcinoma 0%
Sarcoma 3%
Colorectal Cancer 0%
Other 29%
Yes
Unknown
Other
Cutaneous Melanoma 9%
The 29% of patients who responded “Other” reported:
Lung Cancer 0%
The 3% of patients who responded “Yes” reported:
Superficial Spreading Malignant Melanoma
Cervical Cancer Maxillary Sinus Papillary Thyroid Cancer
10%
10%
Meningioma 0%
75%
BAP1
10%
Mesothelioma 0%
10%
Testicular
30%
25%
Other BRCA tumors (tumor associated with BRCA gene)
Neuroendocrine Cancer 0%
10%
Thyroid
Squamous Cell Cancer
20%
0%
Ovarian Cancer 0%
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages
Personal and Medical Profile Has the patient had any other diagnosed conditions? Check all that apply.
Anemia 6%
High Cholesterol 8%
Arthritis 7%
HIV Infection 1%
Asthma 5%
Palpitations/Irregular Heartbeat 3%
Autoimmune Disease 2%
Pneumonia 5%
Colon Polyps 7%
Rheumatic Fever 1%
Congestive Heart Failure 1%
Seizures/Convulsions/Epilepsy 1%
Sinus Problems 5%
Easy Bleeding or Bruising 1%
Emphysema/Chronic Bronchitis 1%
Thyroid Disease 7%
Hay Fever 8%
Ulcers 1%
Heart Murmur 3%
Venereal Disease 1%
High Blood Pressure 11%
15% Other
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages
Does the patient have a history of any other eye conditions?
17%
Cataract
0%
Diabetic Eye Disease
10%
Dry Eye
13%
Infection of the Eye (for example, herpes) Glaucoma or High Eye Pressure Eye Freckle
6%
3%
6% 6%
Itchy Red Eyes (allergies)
Lazy Eye
3%
Lens Implant
1%
Macular Degeneration
The 22% of patients who responded “Other” reported:
0% 0% 0%
No Lens in the Eye
Optic Nerve Damage
l Floaters l Inferior Lattice Degeneration l Macular Hole in Both Eyes l Macular Pucker l Ocular Migraines l Posterior Vitreous Detachments l Pre-glaucoma
l Astigmatism l Bilateral Detached Retinas l Chronic Blepharitis l Congenital Eye Birthmark l Corneal Erosion
Trauma/Accident to the Eye
13%
Very Nearsighted
22%
Other
At the time of diagnosis, had the patient ever had LASIK eye surgery? 13% Yes 87% No
l Esotropia l Eye Stent
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages
Personal and Medical Profile How frequently was the patient having eye exams at the time of their OM diagnosis?
Has the patient ever taken hormones?
1% Unknown
38% Yes
The 38% of patients who responded “Yes” reported:
7%
Approximately Every 6 Months
Oral contraceptive pills (i.e., birth-control pills that contain estrogen and/ or progesterone) Estrogen replacement medications Testosterone replacement medications
56%
42%
Approximately Every Year
22% 22%
26%
Approximately Every 2 Years
10%
Less Frequently
2%
More Frequently
Other sex hormones 5%
5%
61% No
Never Had an Eye Exam Prior to Diagnosis
Other 3%
0%
Unknown
42%
What color eyes does the patient have?
The 9% of patients who responded “Other” reported:
25%
22%
78% Hazel 22% Heterochromatic
9%
2%
BLUE
BROWN
GRAY
GREEN
OTHER
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages
What color skin does the patient have?
68%
24%
5%
3%
2%
0% 0%
Light, pale white
White, fair
Olive, moderate brown
Brown, dark brown
Very dark brown to black
Medium, white to light brown
Other
What hair color was the patient born with?
5%
Black
33%
Blonde
51%
BLUE
BROWN
GRAY
GREEN
Brown
9%
Red
2%
Other
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages
2% Unknown
Diet and Lifestyle At the time of diagnosis, was the patient following a special diet?
At the time of diagnosis, was the patient taking dietary supplements?
30% Yes
89%
10%
68% No
1%
The 30% of patients who responded “Yes” reported:
Yes
No
Unknown
Vitamin B6 3%
B Complex 6%
Glucosamine 2%
Vitamin B12 6%
Calcium 9%
Iron 3%
The 10% of patients who responded “Yes” reported:
Coenzyme Q10 2%
Milk Thistle 3%
Vitamin D 14%
Ketogenic 11%
Vegan 11%
Daily 7%
Mushrooms 1%
Vitamin E 7%
Fish Oil 8%
Saw Palmetto 2%
Zinc 3%
Low Carb 22%
Vegetarian 34%
Flaxseed 3%
Selenium 3%
Other 5%
Paleo 22%
Folic Acid 3%
Turmeric 2%
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages
At the time of diagnosis, was the patient exercising? (Activity requiring physical effort, carried out to sustain or improve health and fitness)
79%
Yes
20%
No
1%
Unknown
The 79% of patients who responded “Yes” reported that they exercised:
Every Day 30%
Few Times a Week 65%
Once a Week 5%
2022 VISION Registry Data Report
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III. Ocular Melanoma Linkages
Occupation and Exposures At the time of diagnosis, was the patient employed? Check all that apply.
In the patient’s life, were they ever exposed to any of the following environmental factors through occupation, residence or hobbies? Check all that apply.
Asbestos 9%
Screen Time 10%
77%
Tanning Beds 10%
Asphalt 1%
Textile Fibers 2%
Chemicals 9%
23%
UV 12%
Coal 2%
Wood Dust 1%
Diesel Exhaust 2%
None 14%
Formaldehyde 3%
Yes
No
Unknown 4%
Gasoline Exhaust 3%
The 77% of patients who responded “Yes” reported employment in:
Other 5%
Pesticides/Herbicides 8%
Radioactivity 5%
Clerical 6%
Sales 4%
Health 18%
Teacher 7%
Professional 41%
Wood 1%
Service Sector 3%
Other 20%
2022 VISION Registry Data Report
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PATIENT VOICE “In Canada, there are only about 200 cases of OM diagnosed per year — for such a rare disease, countries need to work together on new treatments and to search for a cure. I am excited to join the VISION Registry and I am a firm believer that the collective data in this registry will be a huge help in solving the OM puzzle.” — VISION Participant in Canada
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
The Primary Ocular Melanoma (OM) section provides an understanding about primary OM for the patients whose information and experiences have been shared with VISION. The data included in this section is divided into four categories: Diagnosis, Symptoms, Biopsies and Treatment.
Symptoms and Diagnosis Did the patient experience symptoms prior to the official diagnosis?*
The 72% of patients who responded “Yes” reported:
Blurred Vision
21%
Other 12%
Floaters 15% Flashes of Light 21%
28% No
The 12% of patients who responded “Other” reported:
72% Yes
l A veil began coming down into my sight line l Before radiation, I would occasionally get a horrible sharp pain in my OM eye l Change in vision — just thought I needed a stronger eyeglass prescription l Dark spot in field of vision l Double vision l Intermittent sharp pain which stopped after treatment, very slight vision changes l Rippling or wavy pattern in one area of my vision
Headaches 6%
Pressure in the Eye
4%
Red Eye 2%
Vision Loss 12% Sensitivity to Bright Light 7%
* Please note: the questions in this section are answered from the time point of the initial diagnosis of primary ocular melanoma.
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
For approximately how long were the symptoms experienced before a diagnosis was made?
Through the patient’s diagnosis journey, what type of doctors did the patient see? Check all that apply.
9%
27%
Less Than a Week
19% 24%
11%
18%
More Than a Week, but Less Than a Month
26%
9%
More Than a Month, but Less Than 3 Months
28%
3%
More Than 3 Months, but Less Than a Year
22%
A Year or More
Emergency or urgent care doctor
Optometrist
Primary care doctor
General ophthal- mologist
Ocular oncologist
Retina specialist
4%
Unknown
Number of doctors patients saw to obtain an OM diagnosis
3% 16% 40% 31% 8% 2%
ONE DOCTOR
TWO DOCTORS
THREE DOCTORS FOUR DOCTORS
FIVE DOCTORS
SIX DOCTORS
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
Diagnosis How far did the patient travel to receive an official OM diagnosis?
23%
Less Than 10 Miles
37%
10 to <50 Miles
20%
50 to <100 Miles
18%
100 to <500 Miles
3% Unknown
1%
Biopsy Was the patient offered a biopsy?
500 to <1,000 Miles
1%
Over 1,000 Miles
35% No
62% Yes
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
Did the patient have a biopsy?
Out of the 57% of patients who had a biopsy, in retrospect, how likely were they to make the same decision?
57%
43%
2%
NOT AT ALL
Yes
No
0%
A LITTLE BIT
Why did the patient not have a biopsy? Check all that apply.
6%
The 57% of patients who responded “Yes” reported whether results affected treatment and care:
SOMEWHAT
0%
QUITE A BIT
88%
No impact on screening
VERY MUCH
or further care 32%
4%
48%
UNKNOWN
Other 29%
42%
Concern for spread 15%
Out of the 43% of patients who did not have a biopsy, in retrospect, how likely were they to make the same decision?
Not offered 12%
10%
Unknown 10%
28%
NOT AT ALL
Side effects 2%
9%
A LITTLE BIT
Cost 0%
Yes
No Unknown
11%
SOMEWHAT
0%
QUITE A BIT
The 48% of patients who responded “Yes” reported: Changed frequency of follow-up 27% Other 30% Changed frequency of scans 29%
26% 26%
VERY MUCH
Offered adjuvant therapy 14%
UNKNOWN
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
Treatment What was the treatment for the primary tumor? Check all that apply. 18% Enucleation 64% Plaque Radiation 8% Proton Beam Radiation 1% Surgical Resection
Did the patient experience side effects from the treatment?
75% Yes
The 75% of patients who responded “Yes” reported:
25% No
Blurred Vision 22%
Dark Spot on Eyelid or Eye
1%
2% Other Radiation
7% Other
Flashes of Light 20%
Floaters 14%
Approximately how far did the patient travel to receive treatment?
Headaches 5%
19%
Pressure in the Eye 4%
Less than 10 Miles
21%
Red Eye 2%
10 to <50 Miles
Sensitivity to Bright Light 8%
23%
50 to <100 Miles
29%
Vision Loss 12%
100 to <500 Miles
2%
Other 12%
500 to <1,000 Miles
6%
Over 1,000 Miles
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
At the time of primary diagnosis, where did the patient get information about their diagnosis and treatment options? Check all that apply.
40%
16%
13%
10%
9%
7%
2%
Local eye doctor 1% 2%
A patient advocacy organization
Did not receive information
The specialist who made the diagnosis
Radiation oncologist
Medical oncologist
Ocular oncologist
Primary care doctor
Other
The 10% of patients who responded “Other” reported:
AMERICAN CANCER SOCIETY
INTERNET
LISTSERV
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
Patient and Care Team At the time of primary diagnosis, how would you rate the information given to the patient about their care and treatment?
At the time of diagnosis, did the patient have enough opportunities to talk with their care team?
0%
NOT AT ALL
35%
35%
17% 17%
A LITTLE BIT
SOMEWHAT
31%
QUITE A BIT
35%
VERY MUCH
17%
At the time of diagnosis, did the patient feel free to ask questions?
3%
NOT AT ALL
10%
11%
A LITTLE BIT
3%
SOMEWHAT
3%
14%
QUITE A BIT
69%
VERY MUCH
POOR
FAIR
GOOD
VERY GOOD
EXCELLENT
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
At the time of diagnosis, was there trust between the patient and their team?
At the time of diagnosis did the patient’s care team make it easy for the patient to talk openly about issues that concern them?
0%
3%
NOT AT ALL
NOT AT ALL
7%
7%
A LITTLE BIT
A LITTLE BIT
14%
17%
SOMEWHAT
SOMEWHAT
14%
28%
QUITE A BIT
QUITE A BIT
65%
45%
VERY MUCH
VERY MUCH
At the time of diagnosis, did the patient’s care team spend enough time talking with them?
At the time of diagnosis did the patient’s care team use language that the patient understood (avoided medical jargon, used clear terms) ?
3% 3%
NOT AT ALL
0%
NOT AT ALL
A LITTLE BIT
4%
A LITTLE BIT
14%
SOMEWHAT
17%
SOMEWHAT
32%
QUITE A BIT
31%
QUITE A BIT
48%
VERY MUCH
48%
VERY MUCH
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
Patient and Care Team At the time of diagnosis, did the patient’s care team answer the patient’s questions openly?
0% 0%
NOT AT ALL
A LITTLE BIT
14%
SOMEWHAT
21%
QUITE A BIT
65%
VERY MUCH
Making Decisions At the time of diagnosis, did the patient feel comfortable when making decisions about their care?
At the time of diagnosis, was the patient satisfied with communication with their care team?
7%
9%
NOT AT ALL
NOT AT ALL
3% 3%
4%
A LITTLE BIT
A LITTLE BIT
19%
SOMEWHAT
SOMEWHAT
21%
34% 34%
QUITE A BIT
QUITE A BIT
66%
VERY MUCH
VERY MUCH
2022 VISION Registry Data Report
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IV. Primary Ocular Melanoma
At the time of primary diagnosis, what was most important to the patient when making choices about their care?
% of patients ranking 1st, 2nd or 3rd 79%
% of patients ranking 1st 51%
Most important issues
Most important issues
Long-term survival
Long-term survival
28%
63%
Experience of the medical team in OM
Experience of the medical team in OM
2%
27%
Insurance coverage
Impact on family
2%
16%
Ability to obtain care closer to home
Impact on family
Does not preclude future treatment options
2%
13%
Ability to obtain care closer to home
Does not preclude future treatment options
1% 1% 1% 0%
10% 4% 8% 1%
Expenses for care
Expenses for care
Insurance coverage
Overall quality of life
Overall quality of life
Support services offered
Support services offered
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IV. Primary Ocular Melanoma
Support Services At the time of diagnosis and treatment, did the patient utilize support services?
1% Unknown
The 15% of patients who responded “Yes” reported that, at the time of diagnosis and treatment, they utilized the following support services:
32% Not Offered
15% Yes
Financial support 5%
None 5%
Palliative care 5%
Other 14%
Psychological 24%
l Online support group l Connecting with other patients of my treating ocular oncologist The 14% of patients who responded “Other” reported:
Social work 19%
Support group 28%
52% No
The 28% of patients who responded “Other” reported:
At the time of diagnosis and treatment, where did support services come from?
PATIENT ADVOCACY ORGANIZATION
33%
l My ocular oncologist’s other patients l Therapy l Professional Society Cancer Network
l Insurance company l Facebook
39%
TREATMENT CENTER
28%
OTHER
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IV. Primary Ocular Melanoma
At the end of the Primary Diagnosis and Treatment Survey, VISION participants are given the opportunity to provide additional information they think is important to share with patients and researchers to increase knowledge, advance research, and ensure the best care. The following comments were provided: “There was a general absence of support and complete information regarding the disease. Most of my decision process was a result of internet results.”
“I wish my surgeon had told me about the possibility of metastasis and also require scans in the future.”
“I would have liked to utilize support services. I don’t remember if they were offered as I was just focusing on getting through the initial surgery and dealing with the diagnosis.”
Dr. Marlana Orloff and patients attend the Eyes on Cure: Patient and Caregiver Symposium in North Carolina.
“The oncologist told me he could save my eye or my life. It was very frightening.”
Did the patient find the support services helpful?
“I had no symptoms on diagnosis. Had a head CT for a sinus surgery and they saw something in my eye. Had 20/20 vision in affected eye.” “Diagnosed during a routine eye exam by optometrist with immediate referral to a retina specialist. Retina specialist immediately referred to OO but the closest one was over 200 miles away. Had to wait three weeks to get in with little or no info except what is on internet.”
0%
NOT AT ALL
8%
A LITTLE BIT
25% 25%
SOMEWHAT
QUITE A BIT
42%
VERY MUCH
33
PATIENT VOICE “It’s not clear what causes ocular melanoma and there are often no symptoms, so even if your vision is fine... go and get a FULL
eye test at your local optician.” — VISION Participant in Australia
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V. Primary Tumor Surveillance The Primary Tumor Surveillance section provides an overview of the surveillance for recurrence of the primary eye tumor of the patients whose information and experiences have been shared with VISION. The data in this section includes type of surveillance and its schedule.
How often was surveillance done for local recurrence in the affected eye?
43%
Approximately every 3 months
41%
Approximately every 6 months
Surveillance Was surveillance (follow-up) for local recurrence in the affected eye done?*
8%
Approximately every 12 months
5%
Other
85% Yes
15% No
3%
The 85% of patients who responded “Yes” reported:
Unknown
Routine ocular oncology follow-up
97%
Other 3%
* Please note: the questions in this section are answered from the time point following treatment of the primary eye tumor.
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V. Primary Tumor Surveillance
Surveillance After the patient’s primary diagnosis, was surveillance done to detect distant disease (metastasis) ?*
Surveillance Plan How often was surveillance for metastasis done?
14%
Approximately every 3 months
91%
48%
Approximately every 6 months
13%
Approximately every 12 months
21%
Other
4%
9%
Unknown
Yes
No
How involved was the patient in deciding their surveillance plan?
The 91% of patients who responded “Yes” reported: Blood tests (i.e., liver function tests) 19%
18%
NOT AT ALL
Physical examination
10%
17%
A LITTLE BIT
30%
SOMEWHAT
Chest X-rays 11%
PET scan 7%
16%
QUITE A BIT
CT or CAT scan 18%
Ultrasound 7%
25%
VERY MUCH
MRI 19%
Other 2%
1%
UNKNOWN
* Please note: In this question, patients were able to check all that apply.
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V. Primary Tumor Surveillance
At the end of the Surveillance section of the Primary Diagnosis and Treatment Survey VISION participants are given the opportunity to share their experience with their follow-up plan after being diagnosed with ocular melanoma. Patients who provided comments particularly expressed challenges they experienced with surveillance, including COVID impacting monitoring plans; examples are outlined below: “When I asked if there would be ongoing surveillance, I was informed by the oncologist that there was no point as there was no treatment.” “The original doctor was great at the initial diagnosis of OM, but never told me it could metastasize. He never did follow-up scans. In fact, after a few years, he stopped looking at the OM eye (which was enucleated) and only briefly looked at my good eye.” “MRIs and CTs changed to ultrasounds as insurance would not cover these after a certain amount of years.” “I had difficulty getting an MRI approved by insurance unless I had symptoms. I plan on getting an ultrasound if possible.”
How satisfied was the patient with their surveillance plan?
10%
NOT AT ALL
6%
A LITTLE BIT
13%
SOMEWHAT
27%
QUITE A BIT
41%
VERY MUCH
“COVID has impacted surveillance arrangements.”
3%
UNKNOWN
2022 VISION Registry Data Report
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PATIENT VOICE “I was diagnosed with choroidal melanoma in 2008 and treated with plaque brachytherapy in Houston, Texas. Since then, I have had no evidence of the disease. No one should have to face ocular melanoma alone, and participating in the VISION registry unites courageous melanoma patients and caregivers across the world as we work together.” — VISION Participant in USA
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VI. Recurrence of Primary Tumor The Recurrence of Primary Tumor section provides an understanding of recurrence of the primary tumor for patients whose information and experiences have been shared with VISION. The data included in this section is in three categories: Timing of Diagnosis, Treatment and Surveillance.
What treatment did the patient have for the recurrence of the primary tumor in the affected eye? 50%
50% Surgery (enucleation or other surgical procedure) 0% Radiation
Other (laser)
Recurrence After primary treatment of the eye tumor was there recurrence (tumor growth) in the affected eye?*
0% Combination
The 3% of patients who responded “Yes” reported that primary tumor recurrence in the affected eye occured:
95%
Within three years of primary diagnosis Within two years of primary diagnosis Within 6 months of primary diagnosis Within one year of primary diagnosis
50%
0%
50%
0%
3%
2%
Greater than three years 0%
Yes
No
Unknown
* Please note: the questions in this section are answered from the time point of recurrence of the primary ocular melanoma.
2022 VISION Registry Data Report
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VI. Recurrence of Primary Tumor
Monitoring Following recurrence of the primary tumor, did the patient’s frequency of monitoring in the affected eye change?
Making Decisions At the time of recurrence (tumor growth) in the affected eye, did the patient feel comfortable when making decisions about their care?
100%
0% NOT AT ALL
0%
A LITTLE BIT
33.33%
SOMEWHAT
0%
QUITE A BIT
0%
0%
33.33% 33.33%
VERY MUCH
Yes
No
Unknown
UNKNOWN
Following recurrence in the affected eye, how satisfied was the patient with their monitoring plan?
0% 0% 0%
NOT AT ALL
A LITTLE BIT
SOMEWHAT
100%
QUITE A BIT
0%
VERY MUCH
2022 VISION Registry Data Report
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2022 VISION Registry Data Report
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VII. Metastasis The Metastasis section provides insight into metastasis for patients whose information and experiences have been shared with VISION. The data is divided into three categories: Diagnosis, Symptoms and Treatment. Diagnosis At the time of diagnosis with metastatic ocular melanoma, where was the metastasis detected? Check all that apply.*
Pictured here (from L to R): Dr. Sara Selig, Dr. Thomas Olencki and Dr. Esther Damaser (founding member of the CURE OM Patient and Family Steering Committee).
60%
The 24% of patients who responded “Other” reported:
40% Peritoneum
40% Pancreas 20% Right adrenal gland
24%
10%
5%
LYMPH NODES 1%
“The VISION Registry will accelerate our own research efforts and also allow for new collaborations that wouldn’t have been possible before. OM patients have always been the most important member of their own treatment team, and now they are impacting life-saving research all over the world.” — Dr. Marlana Orloff, Clinician/Researcher
BRAIN
LIVER
OTHER
LUNG
Out of the 123 patients who completed surveys, 20 reported having metastases. * Please note: the questions in this section are answered from the time point of the initial diagnosis of primary ocular melanoma.
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VII. Metastasis
At the time of diagnosis with metastasis was the patient having symptoms?
At the time of diagnosis with metastasis, how was metastasis detected? Check all that apply.
90%
3% Blood tests (i.e., liver function tests)
3% Ultrasound
0% Chest X-rays 0% Physical examination
48% MRI
17% PET scan
10%
Yes
No
The 10% of patients who responded “Yes” reported the following symptoms:
29% CT or CAT scan
Shortness of breath
Abdominal pain 100%
0%
Bone pain 0%
Vomiting 0%
Yellowing of the eyes
Fatigue 0%
0%
Loss of appetite 0%
Other 0%
Nausea 0%
2022 VISION Registry Data Report
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VII. Metastasis
Biopsy At the time of diagnosis of metastasis was a biopsy taken?
Treatment At the time of diagnosis with metastasis being reported what treatment did the patient have? Check all that apply.
67%
10%
Focal Ablation
16%
Immunotherapy
33%
24%
Liver Directed Therapy*
6%
9%
Observation
16%
Surgical resection
6%
Tebentafusp
Yes
No
Unknown
13%
Other
Of the 67% of patients who reported “Yes,” the following gene mutations were found in the biopsy tissue:
The 13% of patients who responded “Other” reported:
25% LEAP trial
25% Autologous Vaccine
Unknown 60%
GNAQ 7%
BAP1 7%
Not applicable
7%
GNA11 12%
25% Cyberknife
25% C-met trial
* Patients reported immunoembolization, chemoembolization and radioembolization.
2022 VISION Registry Data Report
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VII. Metastasis
Approximately how far did the patient travel to receive treatment for metastatic disease?
At the time of diagnosis with metastasis, where did the patient get information about their diagnosis and treatment options? Check all that apply.
0%
Less than 10 miles
63%
50%
10 to <50 miles
0%
17%
50 to <100 miles
13% 7%
0%
100 to <500 miles
50%
500 to <1,000 miles
Medical oncologist
Radiation oncologist
The specialist who made the diagnosis
Other
0%
Over 1,000 miles
At the time of diagnosis with metastasis, how would you rate the information given to the patient about their care and treatment?
75%
25%
0%
0%
0%
POOR
FAIR
GOOD
VERY GOOD
EXCELLENT
2022 VISION Registry Data Report
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VII. Metastasis
Patient and Care Team At the time of diagnosis with metastasis, did the patient have enough opportunities to talk with their care team?
At the time of diagnosis with metastasis, was there trust between the patient and their care team?
0% 0%
NOT AT ALL
A LITTLE BIT
0% 0%
NOT AT ALL
SOMEWHAT 0%
A LITTLE BIT
20%
QUITE A BIT
20% 20%
SOMEWHAT
80%
VERY MUCH
QUITE A BIT
0%
60%
VERY MUCH
At the time of diagnosis with metastasis, did the patient feel free to ask questions?
At the time of diagnosis with metastasis, did the patient’s care team spend enough time talking with them?
0% 0%
0% 0%
NOT AT ALL
NOT AT ALL
A LITTLE BIT
A LITTLE BIT
SOMEWHAT 0%
20%
SOMEWHAT
20%
0%
QUITE A BIT
QUITE A BIT
80%
80%
VERY MUCH
VERY MUCH
2022 VISION Registry Data Report
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VII. Metastasis
At the time of diagnosis with metastasis, did the patient’s care team make it easy for the patient to talk openly about issues that concern them?
At the time of diagnosis with metastasis, did the patient’s care team answer the patient’s questions openly?
0% 0%
0% 0%
NOT AT ALL
NOT AT ALL
A LITTLE BIT
A LITTLE BIT
SOMEWHAT 0%
SOMEWHAT 0%
40%
20%
QUITE A BIT
QUITE A BIT
60%
80%
VERY MUCH
VERY MUCH
At the time of diagnosis with metastasis, did the patient’s care team use language that the patient understood (avoided medical jargon, used clear terms) ?
At the time of diagnosis with metastasis, was the patient satisfied with communication with their care team?
0% 0%
0% 0%
NOT AT ALL
NOT AT ALL
A LITTLE BIT
A LITTLE BIT
25%
20%
SOMEWHAT
SOMEWHAT
0%
0%
QUITE A BIT
QUITE A BIT
75%
80%
VERY MUCH
VERY MUCH
2022 VISION Registry Data Report
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VII. Metastasis
Making Decisions At the time of diagnosis with metastasis, did the patient feel comfortable when making decisions about care?
5%
NOT AT ALL
0%
A LITTLE BIT
15%
SOMEWHAT
30%
QUITE A BIT
50%
VERY MUCH
2022 VISION Registry Data Report
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VII. Metastasis
At the time of diagnosis with metastasis, what was most important to the patient when making choices about their care?
% of patients ranking 1st, 2nd, or 3rd 90%
% of patients ranking 1st 36%
Most important issues
Most important issues
Long-term survival
Long-term survival
27%
9% 54% 63% 27% 9%
Experience of the medical team in OM
Experience of the medical team in OM
27%
Does not preclude future treatment options
Ability to obtain care closer to home
9%
Impact on family
Impact on family
0%
Does not preclude future treatment options
Ability to obtain care closer to home
0% 0% 0% 0%
Expenses for care
Expenses for care
0% 0% 0%
Insurance coverage
Insurance coverage
Overall quality of life
Overall quality of life
Support services offered
Support services offered
2022 VISION Registry Data Report
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VII. Metastasis
Support Services At the time of diagnosis with metastasis, what support services were utilized by the patient?
4% Dietitian services 0% Financial support
0% Physiotherapy 4% Psychological
18% Support group
13% Not offered 9% Unknown
4% Other
0% Palliative care
4% Social work
48% None
First in-person meeting of the VISION Steering Committee in Washington, DC in 2017.
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VII. Metastasis
Where did the support services come from?
At the end of the Metastasis Diagnosis Survey, participants provided additional information about their experience that they thought would help other patients and experts provide the best patient care. They shared what they learned through their own journey with metastasis and offered insights and advice to support others. A number of comments are outlined below:
50%
PATIENT ADVOCACY ORGANIZATION
0%
TREATMENT CENTER
“Making sure that patients are aware to advocate for molecular typing of their tumor with biopsy. This is not always offered and can guide treatment. Researching options and not being afraid to search out second opinions.”
50%
OTHER (FACEBOOK)
“Be aware of internet sites for metastatic ocular melanoma.”
“Limited options for lung metastasis and difficult to find options since most clinicians treat liver mets and are surprised when a patient has lung mets only.”
Did the patient find the support services helpful?
0% 0%
NOT AT ALL
“Just make sure that you are comfortable with your diagnostic team and that they are up to date on treatment and new trials.”
A LITTLE BIT
“Always question your oncologist and challenge them when things don’t add up. Always get a second opinion.”
25%
SOMEWHAT
75%
0% 0%
QUITE A BIT
“OM patients/doctors should know that OM does not only metastasize to liver/lung. If so much emphasis hadn’t been placed on that, metastasis may have been diagnosed sooner and not invasive to my inferior vena cava (IVC).”
VERY MUCH
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