Aim At Melanoma

Programs: Websiteaim at melanoma ("aim") is an international organization engaged in a wide variety of patient advocacy initiatives. Among these is the maintenance of the most comprehensive us website on melanoma (www. Aimatmelanoma. Org). In 2016, aim completed building its new website so it would better be able to meet the needs of the melanoma community. This included making it easier for users to locate pertinent information to assist them in better understanding their melanoma diagnosis, determining their treatment options, and understanding follow-up care. The organization continues to use various tools such as search engine optimization and distributing brochures to healthcare providers throughout the us to educate melanoma patients about the website's resources. The website is also updated regularly for medical accuracy. The us website alone, had more than 800,000 unique visitors each month. Patient advocacyaim provided a free nurse on call service. Throughout the year, melanoma patients, caregivers, and families reached out to aim's oncology nurse to ask questions about, among other things, their/or their loved one's melanoma diagnosis, treatment options, and follow-up care as well as questions regarding prevention and early detection of the disease. Aim also coordinated numerous patient advocacy events, which include eight patient and caregiver symposia led by nationally recognized melanoma oncologists at major cancers such as md anderson, columbia medical center. Ucla, and ucsf. Aim also videotaped and edited these symposiums, which were then uploaded onto youtube so that they could be viewed by individuals in the u. S. And worldwide. Aim also provided support groups for patients, families, and survivors. Aim maintained a facebook page, which now has over 20,000 followers and a twitter account of over 5. 600 followers in order to provide other sources of information for the melanoma community. Aim continued to represent patients on the us fda odak committee, the two largest us cooperative oncology groups, swog and ecog, the nccn, and the melanoma world society. Aim also presented on the melanoma patient perspective at numerous meetings both in the u. S. And throughout the world. Global advocacyaim's patient advocacy was a global effort. Aim continued to host country specific, fully translated melanoma websites in germany, france, united kingdom, spain, italy, and australia. In 2016, aim supported and mentored patient advocacy groups in the united kingdom, portugal, germany, france, italy, spain, israel, latin america, and brazil. Aim also began its support and mentoring of additional patient advocacy groups, which included israel and east europe. Aim made it possible for the patient advocates to attend international melanoma meetings where they met with key opinion leaders in the melanoma community, and where they presented the patient perspective to relevant groups. Aim assisted in the development of some of their respective websites providing not only technical support but also material for the sites. Aim continued to search for additional patient advocacy groups that it could support in 2016. Imwgin april 2006, aim formed the international melanoma working group (imwg). The imwg is based on the premise that melanoma requires a focused, multi-disciplinary effort among the world's leading melanoma investigators in order to provide for a better understanding of the biology of melanoma, to accelerate the quest for more effective therapies, and eventually to develop a cure for the disease. The imwg provides a think tank atmosphere for the world's leading melanoma experts to gather away from large meetings. Since its inception, the imwg has undertaken several key projects as a result of collaboration among its members and continues to work on additional efforts that will lead to the development of more effective treatment options for melanoma patients. Imwg members, which consist of over forty melanoma experts from throughout the world, met in march and october of 2016. Among its accomplishments in 2016, the iwmg continued to work on its international clinical trial network which aim continues to work towards opening an international melanoma tissue bank of annotated fresh frozen primary melanoma tissue at oregon health & science university's knight cancer institute, california pacific medical center, northwestern university's robert h. Lurie comprehensive cancer center, university of pittsburgh cancer institute, and an international site tbd. The tissue bank is the fundamental research tool that does not exist yet for public or private research. Major advances, particularly within breast and prostate cancer, resulted from similar banks. Consequently, melanoma research lags significantly behind the progress that has been made in other cancer research. Nurse initiativein october 2016 created the melanoma nurse initiative (mni). The recent expansion of melanoma therapy has increased the complexity of disease management. Patients may discontinue therapy if not adequately engaged in their own care or supported when they experience side effects. As well, more patients are being treated in the community setting, where expertise is frequently lacking to address these challenges. The mniconsists of:1. Melanoma nurse resource center portal (see graphic, themelanomanurse. Org) this portal will provide a 1-stop shop for all of the educational materials developed content will include consensus statements, side-effect search functions, cne activities, a supportive care q/a portal, and a patient resource center2. Melanoma nurse management toolkit helpful resources such as algorithms, checklists, printable sheets, and searchable content on supportive care aspects of melanoma therapy (side effect management as well as adherence issues) key resources on targeted therapy, immunotherapy, and intralesional immunotherapy online resources as well as print pieces for distribution at regional cancer meeting3. Cjon (ons) supplement on optimizing outcomes for melanoma therapies 7-article supplement in cjon to include an introduction by 2 melanoma physicians, an overview document from our chair, and 5 articles on support strategies for targeted therapy, immunotherapy, and intralesional immunotherapy articles will be made available through open access located on our portal4. Development of patient resource materials customized patient resource/education materials (printable pdfs) will be developed that can be downloadable from the website and distributed by nurses/physician assistants and other hcps topics may include the goals of therapy, the side effects of therapies, important points/strategies around adherence, as well as other supportive resources, such as call-in numbers for financial or other assistance, etc. Specific content on targeted therapies, immunotherapies, combinations, intralesional immunotherapies, and the adjuvant setting will be included