A Pilot Study Examining the Development of an Evidence-Based Patient Booklet about Lymphedema for Newly Diagnosed Melanoma Patients’ was conducted by intern medical student Annie Liu.  This study examines the development and evaluation of an evidence-based patient booklet about lymphedema for newly diagnosed melanoma patients. Its purpose is to uncover any gaps in lymphedema resource tools for melanoma patients, develop and design an appropriate tool and evaluate its design in order to ensure quality in the product.

Lymphedema booklet and reference tool developed and published and is used as a primary resource document for uveal melanoma patients at major cancer treatment centres.

‘A Pilot Study Examining the Development of an Evidence-Based Patient Booklet about Lymphedema for Newly Diagnosed Melanoma Patients’ was conducted by intern medical student Annie Liu.  This study examines the development and evaluation of an evidence-based patient booklet about lymphedema for newly diagnosed melanoma patients. Its purpose is to uncover any gaps in lymphedema resource tools for melanoma patients, develop and design an appropriate tool and evaluate its design in order to ensure quality in the product.

Lymphedema booklet and reference tool developed and published and is used as a primary resource document for uveal melanoma patients at major cancer treatment centres.  View the booklet Click Here

MNC research project ‘Assessing patient and caregiver satisfaction with the Melanoma Network of Canada: A Program Evaluation’ conducted by Melanie Kalbfleisch (now Dr.) into the support programs at MNC and subsequently published a study pointing to the need for ongoing psychosocial support.

Published in the Canadian Oncology Nursing Journal, vol 25, issue 1, winter 2015.  As a result of this report, MNC created our Peer2Peer Within Reach patient and caregiver support program.

‘A survey of caregivers for patients with melanoma’  – to answer the research question ‘What relationship exists, if any, between the burden of care score and socioeconomic status, age, gender, education, or geographical location  of caregivers of patients with melanoma?’ by medical student Oren Zarnett.

• Educational resources should be aimed at programs to help with financial stress (drug costs and homecare)
• Patients and caregivers feel the need for more educational resources and social support networks

There were some respondents who were happy with the services they receive and said they did not need other services

Leftright Strategic Learning Consultants conducted research into existing programs for youth education on sun safety, prior to launching into program design. Research goals were to identify:

• Current or recent sun safety programs that have been launched by other organizations, primarily in Canada, US, England and Australia
• What if anything from current programs might be leveraged
• Pitfalls to avoid and best practices to mirror or incorporate
• Key messages to different ages and stages of children
• Different approaches to raise awareness of sun safety with different ages of children, youth, and teens
• How to utilize the Canadian education system as a delivery channel for the message
• Current and best practices in marketing and communications strategies for sun safety or similar health awareness campaigns
• How to leverage the digital space

Current State of Programs included:

– Literature review: 53 Articles published between 1995-2012; several unpublished reports

– Four 45 minute Interviews (reps from Canada, US and Australia)

– 14 comparative programs which incorporated educational/awareness materials

• Market Research included:

– 25 websites from countries around the world that were specific to sun safety

– 15+ sun-safety specific apps; 4 games about sun safety

– 30+ different videos on the subject of sun safety

– 30 web sites not specific to sun safety but were otherwise specific to our demographic

– University Of Bristol report specific to sun safety and social media

– 20+ sites on the subject of marketing to youth: digital marketing, health-related marketing to

youth, digital campaigns for awareness and behaviour change, general and specific trends

• Education System, Children’s Camps included:

– Analysis of curriculum from each of the provinces and territories in Canada

– Outreach to trustees, principals, Health and Mental Wellness Committee (TDSB)

– Review of Healthy Schools Programs

– 4 Key informant interviews (Toronto and Ontario Eco Schools and Ontario Camps Association)

– Literature review

• Because of rich existing educational materials, do not build from scratch. Consider:– Customization– Advocate use of existing and point to them– Invest effort in ensuring use at schools– Repackage in format/structure appealing to teachers (if appropriate)
  • Look for and create MNC niche elsewhere

  – Digital space for teens; camps, after school programmes, school wide initiatives

  • Develop long-term plan to influence and change school approaches.

  – Grass roots change agents and advocates (teachers, principal, school advisory councils)

  – Pilot small with a few schools

  – Growth plan and endorsement from superintendent; steering committee with

  representation and advocates from each school

  • Short term: leverage, leverage, leverage

  – Shade Program

  – Partner offers – OCA, Public Health, CDA

  – Committees

‘Assessing the need for resources for patients with uveal melanoma’ was conducted by intern medical student Anthony Mak & co investigator, Annette Cyr. Uveal melanoma (UM) is a rare, malignant tumour of melanocytes in the eye that affects the uveal tract. Each year, approximately 150 patients in Canada are diagnosed with UM and are treated at the Princess Margaret Cancer Centre (PMCC), Canada’s leader in UM treatment and research. Presently, there lacks information/education resources and support services for patients with UM in Canada. We at the Melanoma Network of Canada, in partnership with the PMCC, conducted a research study to assess the need for support services and information resources for patients with UM. Our qualitative research study consisted of semi-structured telephone interviews to determine patient perspectives, experiences and opinions regarding information and services that would be benefit and relevant to patients with UM.

Uveal melanoma booklet and reference tool was created and published and is used as a primary resource document for uveal melanoma patients at major cancer treatment centres.  Link to UVEAL booklet

‘CURRENT STATE OF AND OPPORTUNITIES FOR SUN SAFETY AWARENESS PROGRAMMING IN SCHOOLS AND CHILDREN’S PROGRAMS AND CAMPS’ Leftright consultants conducted research that focussed on gathering data on possible delivery channels for the yet to-be-developed the Sun Safety Awareness Program. This report provides details of findings related to two possible delivery channels:

• The Ontario Education System

• Non-school programs for children: Camps and After-School Programs

MNC developed the Sun Awareness and Screen Me programs for youth. Visit screenme.ca or melanomanetwork.ca/screenme

Canadian Cancer Clinical Trials Network (3CTN)

Annette has been on the Steering Committee, the Strategy Committee and the Disease Site committee for increasing the number of melanoma clinical trials since the network started.

The Canadian Cancer Clinical Trials Network (3CTN) is a pan-Canadian initiative to improve the efficiency and quality of clinical trials in Canada. 3CTN will provide support and coordination for a network of teams at cancer treatment centres and hospitals. With regional participation, 3CTN will enable sites to increase their capacity and

http://3ctn.ca/

There has been a significant increase in the numbers of independent clinical trials and numbers of melanoma trials since 2015.

‘A correlative study of melanoma tumor-infiltrating lymphocytes (TILs) and response to vemurafenib’ – Ontario Cancer Research Institute  – Dr. A. Joshua; M. Butler

Vemurafinib is the first targeted agent to show improved overall survival in BRAF mutant metastatic melanoma patients. The

development of resistence to vemurafinib is however invariable limiting the long term use of this agent. Immunotherapies such as ipimulimab have additionally shown durable responses in 20% of patients. Evaluation of tumour tissues has

suggested that increase in number of “tumour infiltrating lymphocytes” (TILs) after treatment with ipimulimab correlated with patients’ clinical response. The role of TILs in patients receiving BRAF inhibitors such as vemurafenib, however, has not been widely studied and it is unknown how critical the immune response is for patients to respond to vemurafenib. Better

understanding of the role of TILs and responses seen in vemurafinb treated patients may lead to new therapeutic strategies to optimize the current treatment paradigm.

https://oicr.on.ca/

Research on TILs is ongoing.

Grant total $50k

Ontario Sun Safety Working Group (OSSWG)

MNC is a member – Annette has been ongoing active participant

Participated in research and development of new sun safety wording and guidelines and fact sheets

Changes included: New consistent sun safety wording; eye protection, so safe tan; peak UV index times, positioning on vitamin D; and adopting SPF 30 as minimum

‘Effectiveness of school-based sun protection education for children and adolescents: A Systematic Review’ by medical intern Mengzhu Jiang.  The primary objective of this study is to determine whether or not there is evidence that school- based sun protection education is effective in promoting sun protection behaviours or attitudes of children, adolescents, or their parents. Secondary objectives are to explore the effectiveness of different types of interventions.

Overall, the evidence for the effectiveness of sun protection education interventions was strong in terms of knowledge, moderate in terms of changing attitudes and behavioural change, and inadequate in terms of skin changes.

‘Assessing the effectiveness of the “Within Reach” peer-to-peer support program for patients diagnosed with melanoma’. Vincent Valdrez, B.H.Sc., M.D. (Cand.) & Annette Cyr 

“In patients diagnosed with melanoma, is there a significant reduction in patient-reported anxiety or improvement in mood associated with their diagnosis following participation in the Within Reach peer-to-peer support program?” In addition, we will assess the patient’s satisfaction with the peer support program.

Ongoing

Pam Ohashi, a Senior Researcher at PMH, has applied for an NCE grant to focus on autoimmunity.  Part of the grant is to look at therapeutic autoimmunity such as irAEs.  We (MNC) serve as an advisor for this grant in our capacity as a patient advocate.  They are proposing to build a Network Centre of Excellence on Immunomodulation, including autoimmunity and cancer immunity.

Research grant pending.

‘The Melanoma Patient Exchange: Insights from a Supportive Group Intervention for Melanoma Patients and their Caregivers’. By Tanya Lazor, Emma Rinaldo, Annette Cyr & Ian Degeer

Published 2017 – Journal of Community and Clinical Practice.

ISSN: 0160-9513 (Print) 1540-9481 (Online) Journal homepage: http://www.tandfonline.com/loi/wswg20

Results of this research have demonstrated high participant satisfaction with an in-person support group for melanoma patients and their caregivers. We have established a support group that is feasible in terms of program structure, session format, and sustainability as a volunteer-run group. Similar non-profit organizations may benefit from using the strategies outlined in this research to provide a low-cost support group option for their population of interest. Future research should explore the psychosocial impacts of participation in the Melanoma Patient Exchange program for participants, alternative methods, such as incorporation of technology, to increase the number of participants attending each session.

Jewish General Hospital – Dr. W. Miller; Sonia del Rincon et al

Clinical problem that will be addressed: Immune checkpoint inhibitor antibodies, which include anti-CTLA4 (ipilimumab) and anti-PD1 (nivolumab and pembrolizumab), have produced durable survival benefits in 20-50% of melanoma patients. However, these therapies can produce severe immune-related toxicity that are life-threatening. Currently, the factors that inform on patient response to immune therapy are unclear. Furthermore, it is still unclear how BRAF and MEK targeted therapies modulate the response to checkpoint inhibitors in melanoma. This information is critical to reduce treatment costs by providing the most effective therapies for patients and to limit costly hospitalization due to treatment-related adverse events.

Deliverables: We will generate a multi-dimensional treatment response algorithm to predict outcomes of immune and targeted therapy in melanoma.

Socio-economic benefits: The economic burden of cutaneous melanoma estimated by the Canadian Cancer Society is approximately $450 million per year. Costs to manage treatment-related grade 3/4 adverse events (AEs) are significant, ranging from $200-10,000 per AE, necessitating the development of improved biomarker-based decision algorithms to inform on patient response. Biomarkers we develop from blood-based biopsies will spare patients with melanoma repeated expensive and sometimes inaccessible tumor biopsies and decrease the reliance on CT scans, which often have long wait times and potential for harmful radiation exposure.

Research grant pending.

Deliverables: Researchers will generate a multi-dimensional treatment response algorithm to predict outcomes of immune and targeted therapy in melanoma.

‘Identifying novel druggable targets in therapy resistant and metastatic melanomas’ being conducted at Jewish General Hospital – Lead investigator Dr. Sonia del Rincon.

About 50% of cutaneous melanomas harbor a mutation in BRAF, with the V600E mutation being the most common. Responses to mutated BRAF are transient, and development of resistance to inhibitors often leads to disease recurrence.

Our team has published several key papers showing that a pair of proteins, termed Mnk1 and Mnk2, cause tumor cells to become metastatic. With this knowledge, we teamed up with the pharmaceutical industry to develop a novel orally bioavailable therapeutic inhibitor of Mnk1 and Mnk2, which we named SEL201. In October 2017, we published that the drug SEL201 could be used to block the aggressiveness of acral melanoma. We are encouraged by the pre-clinical data obtained with SEL201, as patients with acral melanomas are often unresponsive to frontline therapies. Moreover, our recent data with SEL201, suggest that inhibition of Mnk1 and Mnk2 may hold promise in combination with inhibitors of BRAF^V600E and MEK in cutaneous melanomas harboring BRAF or NRAS mutations.

MNC is anticipating assisting in the funding for this research.

AIM 1: Test SEL201 as monotherapy and in combination with inhibitors of BRAF^V600E and MEK in pre-clinical models of melanoma.

Expected outcome (Aim 1): Using our pre-clinical mouse models of cutaneous melanoma we are well poised to identify novel combinations of drugs to (1) improve the efficacy of existing anti-tumor agents, and (2) delay or block therapeutic resistance.

AIM 2: Use state of the art genome editing technology to identify novel targetable survival and metastatic pathways in melanoma.

Expected outcome (Aim 2): A major strength of this aim is that our genome editing approach has an emphasis on cellular targets for which there are FDA approved drugs. Therefore, any target that we identify as being essential for metastasis, for example, can quickly be tested in our pre-clinical models of melanoma.