VISION Registry Data Report
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melanoma.org/VISIONplatform
T hank you for your interest in the VISION Platform (VISION)! I am honored to present VISION’s second data report to the ocular melanoma (OM) community. 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 OM patients and their loved ones worldwide for their dedication and support towards making the VISION Registry a reality and for helping to develop VISION into the robust platform it is becoming. For years to come, VISION will benefit the entire OM community by deepening our understanding of the disease, advancing research and providing opportunities for information exchange and community connection. This year has been a year of growth for VISION. We have significantly increased the number of patients who have enrolled in the Registry from 327 to 421. After a year of receiving helpful input and feedback from the OM patient, caregiver and clinician/research communities, we have made changes to VISION to allow more comprehensive research opportunities and additional support for patients and families. We have broadened the VISION Registry to include additional questions and timepoints to allow for more robust data collection and analysis. We have also expanded the VISION Registry into the full VISION Platform, including the newly launched VISION Discussion Forum and the VISION Clinical Trials Connector Tool, and the Platform continues to grow. We hope these tools provide additional support to patients when they need them the most. We are proud of the co-designed and co-developed cutting-edge Registry that captures the patient and caregiver voice, and centers their experience and knowledge to advance research as well as the growing platform that provides increasing opportunities for education and connection. VISION aims 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. The VISION Registry was co-developed by OM patients, caregivers, researchers and clinicians and is a tool that the entire OM community Dear Ocular Melanoma 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. 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 more effective 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 and build community and connection along the way. 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. This is a strong team effort! T hank you for being a part of our vision — working together we will CURE OM! With Gratitude and Hope,
Sara Selig, MD, MPH Co-Founder and Director, CURE OM
2023 VISION Registry Data Report
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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.
2023 VISION Registry Data Report
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Table of Contents
5
I. The Patient Journey
33
II. Quality of Life
38
III. Appendix
2023 VISION Registry Data Report
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PATIENT VOICE “I participate in VISION because uveal melanoma is a rare cancer and collecting data is more difficult and more important than for more common cancers. I benefited greatly reading studies that had the sort of data collected by VISION and was able to find a promising adjuvant treatment as a result. If my life ends up significantly shortened, I’m proud to know that I may have helped someone else live longer or better by simply filling out some surveys.” — VISION Participant in USA
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I. The Patient Journey
This section provides updated analysis from data reported in the 2022 VISION Registry Data Report and dives deeper into some areas of the patient journey. It covers: participant engagement (an overview of patients and their legally authorized representatives participating in the registry); patient profile (an overview of patients’ personal information); socio-demographics (an overview of patients’ demographic information); OM Linkages (an overview of occupation history and exposures of patients); primary ocular melanoma (data on patients’ journeys with their primary ocular melanoma); and metastatic ocular melanoma (an overview of patients’ journeys with their metastatic ocular melanoma).
VISION Participants
registered and signed the consent form 421
completed personal profile and preferences 236
completed surveys 170
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I. The Patient Journey Personal Profile
What country does the patient live in?
87%
8% 2%
0.5% 0.5% 0.5% 0.5% 0.5%
Slovenia 0.5%
United States
Canada
Australia
Ireland
Mexico
New Zealand
Norway
United Kingdom
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I. The Patient Journey
Socio-demographics What is the patient’s race and ethnicity? (Participants asked to select all applicable responses)
What was the patient’s age at time of diagnosis?
33%
28%
1% 1% 1%
AMERICAN INDIAN/ ALASKA NATIVE
ASIAN
BLACK OR AFRICAN AMERICAN
15%
15%
2%
0%
95%
5%
2%
2%
HISPANIC OR LATINO
NATIVE HAWAIIAN OR OTHER PACIFIC ISLANDER
WHITE
20–29
30–39
40–49
50–59
60–69
70–79
80–89
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. Black or African American: A person having origins in any of the black racial groups of Africa. Terms such as ‘‘Haitian’’ or ‘‘Negro’’ can be used in addition to ‘‘Black or African American.” Hispanic or Latino: A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. Native Hawaiian or Other Pacific Islander: A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. White: A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.
What was the patient’s sex at birth?
70% Female
30% Male
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I. The Patient Journey Personal/Medical Profile
What color eyes does the patient have?
45%
23%
22%
8%
2%
BLUE
BROWN
GREEN
GRAY
OTHER
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I. The Patient Journey
What color skin does the patient have?
70%
22%
4%
Light, pale white 3%
1%
Brown, dark brown 0%
Very dark brown to black 0%
White, fair
Olive, moderate brown
Medium, white to light brown
Other
What hair color was the patient born with?
4%
Black
36%
Blonde
52%
Brown
7%
Red
1%
Other
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I. The Patient Journey
What is the highest level of education the patient completed?
Does the patient have health insurance or any other kind of health care plan?
1% Prefer not to answer
3%
3% No
Secondary (6–12)
7%
Business, Trade, or Vocational School
8%
96% Yes
College, but Did Not Finish
The 96% of patients who responded “Yes” reported:
41%
Graduated From a College or University
37%
21%
Medicare
Post-graduate
4%
1%
Medicaid
Prefer Not to Answer
Other govt. insurance Military health care (Tricare/VA, Champ-VA) Private health insurance Other For 4% of patients who responded “Other” they reported: Medical Service Plan BC, Health Share, Group Health through employer, GreenShield, Employer Group Plan
4%
What is the annual gross income for the household in which the patient lives?
5%
11%
Less Than $50,000 (USD)
65%
28%
$50,000–$99,000
4%
14% 14%
$100,000–$149,999
$150,000–$199,999
8%
$200,000–$249,999
15%
$250,000 +
10%
Prefer Not to Answer
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I. The Patient Journey
Were there any financial considerations that made it difficult for the patient to receive the medical care they wanted?
18% Yes
81% No
1% Prefer not to answer
Time missed from work.” “ children at home.” “
“
For the 18% 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.
Expense for travel to specialist.
Had to send multiple letters to insurance as they were denying approval for plaque radiation that had to be done out of network.” My specialist was in another state. Insurance didn’t cover his charges
Pay to travel for out-of-town care, as well as lodging and care for
or MD visits.” “
out of province.” “ and treatment.” “
Live in a rural area, health care located in main city, had to travel
Insurance would not pay for scans as frequently as oncologist suggested.” “ “ Insurance company rejects claims. Had to pay out of pocket.”
Lack of treatment options available locally, insurance denials for scans
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Did the patient face financial considerations that made it difficult to receive medical care and how did this vary by location of residence? 168 responses I. The Patient Journey Personal Profile/Socio-demographics
The 18% of patients who responded “Yes” live in:
1% Prefer not to answer
Country of residence:
23% Canada 3.5% Norway
(7 responses)
The 1% of patients who responded “Prefer not to answer” live in: 100% United States (2 responses) Country of residence:
(1 response)
18% Yes
3.5% Slovenia (1 response) 70% United States (21 responses)
US region:
US region:
50% Southeast (1 response) 50% Northeast (1 response)
19% West
(4 responses) Southwest (1 response)
5%
81% No
14% Midwest
(3 responses)
38% Southeast 24% Northeast
(8 responses)
The 81% of patients who responded “No” live in:
(5 responses)
Country of residence:
90% United States (123 responses)
Australia (3 responses) Canada (7 responses) Ireland (1 response)
New Zealand (1 response) Mexico (1 response)
2%
1%
US region:
1%
5%
24% West
Midwest (18 responses) Southeast (36 responses)
Northeast (30 responses)
16%
24%
(30 responses) Southwest (9 responses)
1%
7%
29%
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I. The Patient Journey
Comments about financial considerations that made it difficult to receive the medical care he or she wanted:
“Surgeon did not accept any insurance so it was paid out of pocket.”
“Adjuvant treatment not covered by insurance was expensive.”
“Cost for travel and lodging for monthly visits to PA.”
“At time of diagnosis I had a plan that limited coverage to New Jersey, my state of residence.”
“There are some injections for macular edema that are not FDA approved that may clear the edema faster than Avastin. Those are typically not covered by insurance.”
“I had to pay for the surgery prior to having it. I had to borrow the money from a family member.”
“My Insurance plan requires I seek medical care at the hospital I work for and they don’t provide the service.” “My first ‘surgery’ (brachytherapy) was delayed because provider decided not to accept my insurance.”
“Travel to specialists as well as getting referred to specific specialists.”
“High cost of adjunctive care not covered by traditional insurance coverage.”
“ACA is not affordable due to outrageous deductibles.”
“Time missed from work. Primary earner for family of four.”
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I. The Patient Journey Occupation History/Exposures
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.
At the time of diagnosis was the patient employed?
77%
Asbestos 7%
Tanning Beds 11%
Chemicals/Acids/Solvents 9%
Textile Fibers/Dusts 1%
23%
Coal 3%
UV 12%
Diesel Exhaust 3%
Wood Dust 1%
Yes
No
Dyes 2%
X-rays/Radioactive 5%
The 77% of patients who responded “Yes” reported employment in:
Excessive screen time 10%
None 13%
Formaldehyde 3%
Unknown 3%
Clerical 7%
Professional 40%
Gasoline Exhaust 3%
Other 3%
Electrical 1%
Sales 3%
Pesticides/Herbicides 8%
Glass 1%
Service Sector 1%
Health 16%
Teacher 8%
Printers 1%
Wood 1%
Production Supervisors
1%
Other 20%
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I. The Patient Journey Primary Diagnosis
4% Uveal – Iris What is the patient’s primary OM diagnosis?
8% Uveal – Ciliary Body
88% Uveal – Choroidal
Number of doctors patients saw to obtain an OM diagnosis:
4%
17%
43%
29%
6%
1%
ONE DOCTOR
TWO DOCTORS
THREE DOCTORS
FOUR DOCTORS
FIVE DOCTORS
SIX DOCTORS
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I. The Patient Journey
Most patients reported seeing a general ophthalmologist first when experiencing any symptoms during their diagnostic journey. However, patients also reported visiting their primary care doctor, especially when experiencing floaters, or emergency care when they suffered from headaches. What symptoms did the patient experience at the time of diagnosis? Through the patient’s diagnosis journey what type of doctors did the patient see? 189 responses TYPE OF DOCTOR
Emergency or urgent care doctor
General ophthalmologist 82% (40 responses) 68% (26 responses) 68% (17 responses) 83% (19 responses) 79% (11 responses) 64% (7 responses) 100% (7 responses) 67% (2 responses)
Ocular oncologist
Primary care doctor 12% (6 responses) 16% (6 responses) 24% (6 responses) 13% (3 responses) 14% (2 responses) 18% (2 responses)
Retina specialist
PATIENT SYMPTOMS
4% (2 responses) 5% (2 responses) 4% (1 response) 4% (1 response) 7% (1 response) 18% (2 responses)
2% (1 response) 3% (1 response) 4% (1 response)
Blurred vision (49 responses) Flashes of light (38 responses) Floaters (25 responses) Vision loss (23 responses)
26%
—
8% (3 responses)
20%
13%
—
12%
—
—
Sensitive to bright light (14 responses)
7%
—
—
Headaches (11 responses)
6%
—
—
Pressure in the eye (7 responses)
4%
—
—
—
—
33% (1 response)
Dark spot on eyelid or eye (3 responses)
2%
—
—
—
Other (19 responses)
10%
—
—
—
—
—
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I. The Patient Journey
ROOM TO GROW We have presented the data in this report to demonstrate the power of the VISION Registry. Please note that though the outcomes presented are representative of participants who shared their experiences with OM, in some cases the sample size is small and therefore no definitive conclusions can be reported from the analyses. Moving forward, however, we hope to have more responses which would allow us to better understand true similarities and differences between patients.
How far did the patient travel to receive an official OM diagnosis?
19%
Less Than 10 Miles
35%
10 to <50 Miles
18%
50 to <100 Miles
21%
100 to <500 Miles
3%
500 to <1,000 Miles
3%
Over 1,000 Miles
1%
Unknown
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I. The Patient Journey
Did the patient have a biopsy?
Out of the 62% of patients who had a biopsy, in retrospect, how likely were they to make the same decision?
62%
38%
12%
Not at all
Yes
No
2%
A little bit
9%
Somewhat
How did the biopsy results affect the patient’s treatment and care? Check all that apply.
Why did the patient not have a biopsy? Check all that apply.
3%
Quite a bit
Changed frequency of scans Changed frequency of follow-up
No impact on screening or further care
37%
28%
74%
Very much
28%
Not offered 22%
14% Offered adjuvant therapy
Concern for spread
14%
Other 21%
“I completed the VISION survey in order to add my data. Ocular melanoma is a rare cancer so pooling all the data is vitally important to view the big picture of who this cancer effects, what treatments show promise and the challenges we all face. We are stronger together!” — VISION Participant in USA PATIENT VOICE
Unknown 7%
Side effects 2%
Cost 0%
Other 27%
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I. The Patient Journey
What was the treatment for the primary tumor? Check all that apply.
Treatment side effects as reported by patients who had plaque radiation to treat their primary tumor Check all that apply. 41 patients responded with 229 responses
66% Plaque Radiation
1% Surgical Resection
Bleeding in the eye 27%
Inflammation 19%
Blind spots 29%
Loss of vision 44%
16% Enucleation
3% Other Radiation
Blockage of blood vessels in the eye
5%
2%
Nausea
Damage to the retina (radiation retinopathy) 15% Cataracts (cloudiness in the lens of your eye) 29% Blurred vision 59%
Pain and irritation 32%
6% Proton Beam Radiation
8% Other Therapy
Problems with thinking, memory and depression 15%
Puffy eyelids 17%
Double vision 39%
Redness of the eye 34%
Dryness of the eye 32%
Scratchy feeling 27%
Eye scarring 7%
Sinus pain 7%
Feeling like something
is in the treated eye 34%
2%
Sore throat
Feeling tired 34%
Swelling of the eye 12%
Watery or pinkish drainage 10%
Headaches 17%
Increased pressure in
the eye 10%
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I. The Patient Journey
Treatment side effects as reported by patients who had proton beam radiation to treat their primary tumor. Check all that apply. Only 2 patients responded with 13 responses
Treatment side effects as reported by patients who had enucleation to treat their primary tumor. Check all that apply. Only 6 patients responded with 20 responses
Problems with tear ducts
17%
17%
Blind spots
Problems with tear ducts
50%
50%
Blurred vision
Problems with thinking, memory and depression
17% Dryness of the eye
17%
Damage to the retina (radiation retinopathy)
50%
50%
Puffy eyelids
Feeling like something is in the treated eye
17%
17% Puffy eyelids
50%
50%
Dryness of the eye
Redness of the eye
17%
33% Scratchy feeling
Feeling tired
100%
50%
Feeling tired
Socket irritation
33%
50% Socket irritation
Headaches
Watery or pinkish drainage
50% Itchy or watery
50%
33% Watery or
17%
Itchy or watery
pinkish drainage
50%
50%
Loss of eyelashes
Other
33% Loss of vision
17% Other
Treatment side effects as reported by patients who had surgical resection to treat their primary tumor. Check all that apply. Just 1 patient responded with 3 responses
Feeling like something is in the treated eye
100%
100%
Scratchy feeling
100%
Redness of the eye
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At the time of diagnosis and treatment of the primary eye tumor did the patient utilize support services? How did this vary by country and region of residence? 117 responses I. The Patient Journey Personal Profile/Primary Diagnosis
The 13% of patients who responded “Yes” reported:
Country of residence:
7% Australia
7% Canada
(1 response)
(1 response)
3% Unknown
86% United States (11 responses)
The 3% of patients who responded “Unknown” reported:
US region:
73% West
9% Southeast (1 response) 9% Northeast (1 response)
100% United States (4 responses) Country of residence:
(8 responses)
9% Midwest
13% Yes
(1 response)
US region:
The 52% of patients who responded “No” reported:
50% Midwest
25% Northeast (1 response)
52% No
(2 responses)
Country of residence:
25% Southeast (1 response)
6% Australia
(4 responses) Ireland (1 response) Mexico (1 response) New Zealand (1 response) Norway (1 response)
32% Not offered
The 32% of patients who responded “Not offered” reported:
2%
2%
Country of residence:
Canada (4 responses)
Slovenia (1 response)
11%
3%
2%
86% United States (32 responses)
2%
US region:
86% United States (53 responses)
25% Southeast
28% West
(8 responses)
(9 responses) Southwest (2 responses) Midwest (3 responses)
US region:
32% Northeast
6%
21% West
17% Midwest
21% Northeast
(10 responses)
(11 responses)
(9 responses)
(11 responses)
9%
13% Southwest
28% Southeast
(7 responses)
(15 responses)
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I. The Patient Journey
Approximately how far did the patient travel to receive treatment for their primary eye tumor?
16%
Less Than 10 Miles
25%
10 to <50 Miles
22%
50 to <100 Miles
27%
100 to <500 Miles
4%
500 to <1,000 Miles
6%
Over 1,000 Miles
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I. The Patient Journey
How far did the patient travel to receive treatment for their primary care and how did this vary by country of residence? 128 responses
Australia JUST 1 RESPONSE 100 to <500 miles Ireland JUST 1 RESPONSE 10 to <50 miles Mexico JUST 1 RESPONSE Less than 10 miles Norway JUST 1 RESPONSE 10 to <50 miles Slovenia JUST 1 RESPONSE Less than 10 miles
United States 111 RESPONSES
Canada 10 RESPONSES
Less than 10 miles
Less than 10 miles
14%
10%
100%
50 to <100 miles 10 to <50 miles
50 to <100 miles 10 to <50 miles
24%
20%
24%
10%
100%
500 to <1,000 miles 100 to <500 miles
500 to <1,000 miles 100 to <500 miles
28%
20%
4%
20%
Over 1,000 miles
Over 1,000 miles
6%
20%
100%
New Zealand ONLY 2 RESPONSES
10 to <50 miles
50% 50%
100%
100 to <500 miles
100%
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Was surveillance (follow-up) for local recurrence in the affected eye done? 102 responses I. The Patient Journey Surveillance of Primary Tumor
2% Unknown
The 10% of patients who responded “No” reported:
10% No
Country of residence:
10% Canada 10% Ireland 10% Norway
(1 response)
88% Yes
(1 response)
The 88% of patients who responded “Yes” reported:
(1 response)
Country of residence:
70% United States (7 responses)
Australia (1 response)
1%
US region:
7% Canada
29% West
(6 responses) Mexico (1 response) New Zealand (1 response) Slovenia (1 response)
(2 responses)
1%
14% Midwest 14% Southwest (1 response) (1 response) 43% Southeast
1%
1%
(3 responses)
89% United States (80 responses)
US region:
25% West
15% Midwest
24% Northeast
(20 responses)
(12 responses)
(19 responses)
9% Southwest
27% Southeast
(7 responses)
(22 responses)
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I. The Patient Journey
Was surveillance (follow-up) for metastasis done? 102 responses
The 4% of patients who responded “No” reported:
4% No
25% Canada (1 response) 75% United States (3 responses) Country of residence:
US region:
100% Southeast
96% Yes
The 96% of patients who responded “Yes” reported:
(3 responses)
Country of residence:
Australia (1 response)
88% United States (86 responses) US region:
1%
6% Canada
(6 responses) Ireland (1 response) Mexico (1 response) New Zealand (1 response) Norway (1 response) Slovenia (1 response)
26% West
(22 responses) Southwest (8 responses)
1%
9%
1%
16% Midwest
(14 responses)
1%
26% Southeast
(22 responses)
1%
23% Northeast
(20 responses)
1%
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I. The Patient Journey
At the time of primary diagnosis, what was most important to the patient when making choices about their care?
PATIENT VOICE
“As a scientist I have been involved in clinical research in the past and am aware of the impact clinical patient data can have, not only on drug development, but also on patient care and support. This is particularly relevant for ocular melanoma patients where the potential of metastases is real and ever present. The more data there is, the more valuable the analytics will be. Personally I have found VISION very interesting and informative, and particularly reassuring that I am not alone on this OM journey. By participating in VISION, I have been able to make my small contribution to
% of patients ranking 1st, 2nd or 3rd 78%
% of patients ranking 1st
Most important issues
Most important issues
46%
Long-term survival
Long-term survival
31%
65%
Experience of the medical team in OM
Experience of the medical team in OM
5%
23%
Impact on family
Overall quality of life
Does not preclude future treatment options
5%
22%
Ability to obtain care closer to home
the wider OM community.” — VISION Participant in Ireland
1%
21%
Overall quality of life
Impact on family
1%
15%
Expenses for care
Expenses for care
0% 1% 0%
12%
Ability to obtain care closer to home
Insurance coverage
Does not preclude future treatment options
10%
Insurance coverage
1%
Support services offered
Support services offered
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I. The Patient Journey Metastasis Survey
At the time of initial diagnosis with metastasis what treatment did the patient have? Check all that apply.
At the time of diagnosis with metastatic ocular melanoma, where was the metastasis detected? Check all that apply.
21%
Immunotherapy
15% 15%
64%
Regional Liver Directed Therapy
Targeted Therapy
13%
Surgical Resection
21%
11%
Other
7%
6%
6%
3%
Tebentafusp
6%
Focal Ablation
BONE
BRAIN
LIVER
OTHER
LUNG
4% 4% 4%
c-MET Inhibitor
IMCgp-100
Observation
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At the time of diagnosis and with metastatic ocular melanoma did the patient utilize support services? How did this vary by country and region of residence? 32 responses 9% Unknown I. The Patient Journey Personal Profile/Metastasis Diagnosis
The 24% of patients who responded “Yes” reported:
Country of residence:
12% Canada
88% United States (7 responses) US region:
(1 response)
The 9% of patients who responded “Unknown” reported:
12% Not offered
Country of residence: 33% Norway (1 response) 67% United States (2 responses)
43% West
(3 responses)
57% Southeast
24% Yes
(4 responses)
US region:
67% Southeast
(2 responses)
33% Midwest
52% No
(1 response)
The 52% of patients who responded “No” reported:
6% Canada (1 response) 94% United States (16 responses) Country of residence:
The 12% of patients who responded “Not offered” reported:
Country of residence:
US region:
25% Canada
50% United States (2 responses)
25% West
38% Southeast
(1 response)
(4 responses)
(6 responses)
25% Slovenia
US region:
6% Southwest (1 response) 13% Midwest (2 responses)
18% Northeast
(1 response)
(3 responses)
100% West
(2 responses)
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I. The Patient Journey
Approximately how far did the patient travel to receive treatment for metastatic disease?
PATIENT VOICE
“When I was first diagnosed with ocular melanoma at the age of 30, my immediate thought was ‘Why Me?!’… what did I do wrong? What could I have done differently to prevent this? Having a registry that collects all our patient data together will hopefully provide insight on those questions! It’s such a blessing to have this first step of collecting information to start to formulate the potential reasons and figure out what we may have in common. “Ocular melanoma is a rare cancer and it took a lot of effort and collaboration from patients, researchers, doctors, and nonprofits to get a registry funded and set up. Contributing my information is a small gesture towards ensuring that hard work turns into something fruitful. It only takes a few minutes of time to answer questions!” — VISION Participant in USA
4%
Less than 10 miles
13%
10 to <50 miles
2%
50 to <100 miles
4%
100 to <500 miles
2%
500 to <1,000 miles
0%
Over 1,000 miles
75%
Not reported
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I. The Patient Journey
How far did the patient travel to receive treatment for metastatic disease and how did this vary by country of residence? 10 responses
United States 5 RESPONSES 10 to <50 miles
Norway JUST 1 RESPONSE 10 to <50 miles Slovenia JUST 1 RESPONSE Less than 10 miles
80%
100%
500 to <1,000 miles
20%
Canada ONLY 2 RESPONSES
100%
50 to <100 miles Less than 10 miles
50% 50%
Ireland JUST 1 RESPONSE Less than 10 miles
100%
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I. The Patient Journey
At the time of diagnosis with metastasis, what was most important to the patient when making choices about their care?
PATIENT VOICE
“I came across the efforts of CURE OM’s VISION Registry when I was diagnosed with ocular melanoma. Completing the different registry surveys made me aware of the factors that are present under this type of condition and the importance of taking them into account. I keep visiting and updating the VISION Registry hoping that it will help others as it has helped me.” — VISION Participant in Mexico
% of patients ranking 1st, 2nd or 3rd 86%
% of patients ranking 1st 45%
Most important issues
Most important issues
Long-term survival
Long-term survival
Does not preclude future treatment options
50%
31%
Ability to obtain care closer to home
45%
22%
Experience of the medical team in OM
Experience of the medical team in OM
45%
9%
Impact on family
Impact on family
22%
4%
Ability to obtain care closer to home
Overall quality of life
22%
4% 0% 0% 0%
Expenses for care
Overall quality of life
Does not preclude future treatment options
18%
Expenses for care
4%
Insurance coverage
Insurance coverage
0%
Support services offered
Support services offered
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PATIENT VOICE “Anything that will help in providing more sorely needed research I’m on board to help with. This was why I was willing to fill out the surveys in hopes it can help those of us in the future.” — VISION Participant in USA
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II. Quality of Life
This section provides new insights into patients’ quality of life and differences and similarities that might exist between patient groups. Registry participants completed the Functional Assessment of Cancer Therapy — General (FACT-G) questionnaire at different points in their OM journey. The FACT-G is a 27-item questionnaire designed to measure four domains of health-related quality of life (HRQOL) in cancer patients: physical, social, emotional, and functional well-being. Please note the disclaimers included within the report are to provide a more complete understanding of the analysis.
Link to official FACT-G site: https://www.facit.org/measures/FACT-G
Please note that the outcomes presented here are representative of those patients who have shared their experiences with ocular melanoma. Due to a much higher participation rate in the United States these numbers may be skewed and thus making direct comparisons between countries is inappropriate at this time. Moving forward, however, we hope to have a higher participation rate among OM patients residing in countries outside the US. This will allow us to better understand true differences between patients in different countries.
Quality of life (QOL) SCORE RANGE: 0–108 The higher the score, the better the patient’s reported quality of life.
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II. Quality of Life
QOL reported by patients with primary ocular melanoma comparing female versus male respondents. 49 responses
QOL Scores Quality of life (QOL) reported by patients with primary ocular melanoma living in different countries. 49 responses
81
FEMALE (34 responses)
69
AUSTRALIA (1 response)
87
MALE (15 responses)
73
MEXICO (1 response)
83
UNITED STATES (47 responses)
QOL reported by patients with primary ocular melanoma comparing different primary tumor treatments. 49 responses
QOL reported by patients with primary ocular melanoma at different ages. 49 responses 80 AGE RANGE 30–49 years (8 responses) 82 AGE RANGE 50–69 years (31 responses) 85 AGE RANGE 70+ years (10 responses)
79
ENUCLEATION (13 responses)
83
PLAQUE RADIATION (40 responses)
88
PROTON BEAM RADIATION (5 responses)
73
SURGICAL RESECTION (1 response)
QOL SCORE RANGE: 0–108 The higher the score, the better the patient’s reported quality of life.
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II. Quality of Life
Quality of life (QOL) reported by patients with metastatic ocular melanoma living in different countries. 10 responses
98
CANADA (1 response)
82
UNITED STATES (9 responses)
QOL reported by patients with metastatic ocular melanoma at different ages. 11 responses 72 AGE RANGE 30–49 years (1 response)
84
PATIENT VOICE
AGE RANGE 50–69 years (6 responses)
“I’m so grateful to those who created VISION and to those who filled out the outstanding and comprehensive survey! “We have a very rare cancer and rare cancers aren’t lucrative for drug companies, and therefore our cancers don’t get as much funding, research, and treatments discoveries as cancers with a huge population. “Therefore, we all want to do everything we can to support this thorough survey, which will enable researchers to study us and move closer to cures. “Thank you for your part in making all that happen!” — VISION Participant in USA
85
AGE RANGE 70+ years (4 responses)
QOL SCORE RANGE: 0–108 The higher the score, the better the patient’s reported quality of life.
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II. Quality of Life
Quality of life (QOL) reported by patients with metastatic ocular melanoma comparing female versus male respondents. 10 responses 80 FEMALE (7 responses) 90 MALE (3 responses) QOL reported by patients with metastatic ocular melanoma comparing different metastatic tumor treatments. 9 responses 99 FOCAL ABLATION (1 response) 75 IMMUNOTHERAPY (3 responses)
PATIENT VOICE “Having been diagnosed with OM in 2019, I spent part of my career employed by our region’s cancer center as a clinical trials nurse. Through that experience, I learned first-hand about the sacredness of research participation. “I eagerly participated in the VISION not only because I’m grateful for the dedication of those who created the registry and CURE OM initiative, but because I recognize the importance of participation in being the primary way we advance to better treatments, prevention and a possible cure. If not to benefit ourselves, at the very least, it will benefit those who come after us, just as we stand on the shoulders of those patients who came before us.” — VISION Participant in USA
75
LIVER-DIRECTED THERAPY (3 responses)
90
SURGICAL RESECTION (2 responses)
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PATIENT VOICE
PATIENT VOICE
“It’s no big secret that ocular melanoma is a terrible disease. To add to this, we who have ocular melanoma are faced with a bewildering number of treatment options, almost all of which are experimental. The only way to sort out what works and what does not work is to have data on what happens to patients. The VISION patient registry is, in my opinion, a vital tool to achieve this goal. Other successful cancer treatments were driven by intense collaboration among patients and oncologists so that they could quickly stop ineffective treatments and build on those treatments that were having some initial success. That kind of effort in the OM world, using tools such as VISION could eventually lead to more effective treatments and even a cure.” — VISION Participant in USA
“As a Medical Professional who has been an acute care, and ER, nurse, for more than 43 years, discovering I had ocular melanoma during a routine eye exam came as quite a shock. “In all those years I had never heard of ocular melanoma. “I offered my data to VISION in the hopes that we may find some commonalities that could lead to a cure. It is so important to gather the data, and to keep the statistics that are necessary for meaningful research. I encourage everyone who has ocular melanoma to share their information with vision. “Knowledge is power. Individually our data is useless but by putting it out there together we could make a difference.” — VISION Participant in USA
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III. Appendix
We would like to honor the memory of the late Chad Kimbler. Chad was an engaged and dedicated OM patient who served on the VISION Steering Committee from its inception until his death in 2023. We are grateful to Chad and we continue our work towards a cure for OM.
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III. Appendix
VISION Steering Committee Acknowledgment
Are you interested in getting involved in VISION? If so, please reach out to us at: vision@melanoma.org.
We extend our sincerest appreciation to the members of the CURE OM VISION Steering Committee. Their support and dedication in helping to create and launch the VISION Registry in 2021 cannot be overstated. We also take this moment to acknowledge and thank them for their efforts in helping to create the 2023 VISION Registry Data Report.
Sara M. Selig, MD, MPH Co-Founder and Director, CURE OM Boston, MA
Linda O’Brien Patient (Primary Disease) 9 years NED (No Evidence of Disease) Shana Ratner, MD, FACP Daughter and Internist Chapel Hill, NC Family Member of OM Patient Associate Professor Section Chief for Education and Clinical Practice Division of General Internal Medicine and Clinical Epidemiology Associate Director, UNC Institute for Healthcare Quality Improvement Ashley Land Schoenfisch Family Member and Epidemiologist Chapel Hill, NC Cody Chiuzan, PhD Statistician New York, NY Associate Professor Institute of Health System Science Feinstein Institutes for Medical Research Northwell Health Kerry Goetz, M.S. Associate Director, Office of Data Science and Health Informatics Bethesda, MD National Eye Institute
Andrew E. Aplin, PhD Deputy Director Philadelphia, PA
Ivana Kim, MD Ocular Oncologist Boston, MA Associate Professor of Ophthalmology, Harvard Medical School Co-Director, Ocular Melanoma Center, Massachusetts Eye and Ear Infirmary Miguel A. Materin, MD Professor of Ophthalmology Durham, NC Professor of Radiation Oncology Director, Ophthalmic Oncology Duke University Eye Center Rich Carvajal, MD Medical Oncologist New York, NY Deputy Physician-in-chief and Director of Medical Oncology Northwell Health Cancer Institute Marlana Orloff, MD Medical Oncologist Philadelphia, PA Assistant Professor Department of Medical Oncology Thomas Jefferson University Hospital Renee M. Zalinsky, RN, OCN Metastatic Uveal Melanoma Navigator Philadelphia, PA
Melanoma Research Foundation Associate Physician, Brigham and Women’s Hospital
Sidney Kimmel Cancer Center The Kalbach-Newton Professor in Cancer Research Department of Pharmacology, Physiology and Cancer Biology Thomas Jefferson University Susan Vine Patient Queensland, Australia Ocumel Australia and New Zealand Started the support group and Ocular Melanoma Awareness–Aus. Facebook page
Instructor, Harvard Medical School Associate Director, COPE Program Director of US Engagement, Partners in Health Bertil Damato, LRCP, MRCS, MD,
PhD, FRCOphth Ocular Oncologist Oxford, United Kingdom University of Oxford
Senior Clinical Research Fellow and Honorary Consultant Ophthalmologist at Oxford Eye Hospital John Radcliffe Hospital Dan S. Gombos, MD, FACS Ocular Oncologist Houston, Texas Professor and Chief Section of Ophthalmology Department of Head and Neck Surgery, Division of Surgery The University of Texas MD Anderson Cancer Center
Chad Kimbler, BSBA, MA Patient (Metastatic Disease)
I was diagnosed at age 29 in 2015. My genetic testing revealed Castle Class 2, and I developed metastatic disease in 2020. My favorite pasttime is exploring the friendly skies. I am a private pilot, but haven’t been up since my encounter with Ocular Melanoma. Nigel Deacon Patient Diagnosed with ocular melanoma in 2010 which metastasized in 2012. Founded Ocumel Canada to advocate on behalf of Canadian OM patients.
Senior Cancer Care Coordinator Sidney Kimmel Cancer Center
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Thank you to our supporters and sponsors! The VISION Registry would not be possible without the dedication and support of the many ocular melanoma (OM) patients, families, caregivers and generous corporate sponsors who saw value in developing a patient- powered tool to advance patient care and find a cure! Together, our OM community raised $100,000 in seed funding for the Registry through fundraisers, individual donations and grassroots efforts. We also sincerely thank Massachusetts General Hospital for their generous pilot funding along with funding from Castle Biosciences and TriSalus. Because of you, the MRF was able to develop this patient- powered platform focused on a cure.
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PATIENT VOICE “The VISION Registry patients, caregivers and the industry can work together in helping finding a cure for ocular melanoma. The information I contribute as a patient provides important information about myself as a patient in which the industry can start to identify trends and commonalities across all contributors. This can help researchers find a starting point which puts them steps (and years) ahead in finding a cure. Trending information can also start to identify potential clusters of ocular melanoma and put additional awareness and education to help be ahead of OM. VISION is the piece which connects us all by providing valuable information to patients, caregivers, researchers and the industry.” — VISION Participant in USA
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