Tuesday, March 31, 2015

Getting survivors involved in the design of melanoma research: Our PCORI project advances to Tier 2

Great news to share! The project I've been working on in collaboration with Oregon Health & Science University and SolSurvivors has been selected to advance to Tier 2 of PCORI's Pipeline to Proposals Program. Tier 2 awards provide up to $25,000 to help recipients strengthen community partnerships, develop research capacity, and hone a comparative effectiveness question that could become the basis of a large-scale research project.

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in research (like me!) to develop the means to produce community-led funding proposals focused on patient-centered comparative effectiveness research. In 2014, I was part of the inaugural Tier 1 cohort of this program.

Our project, "Developing Infrastructure for Patient-Centered Melanoma Research," aims to involve patients and other critical stakeholders in the development of strategies for preventing and detecting melanoma at an earlier stage, thereby decreasing death rates. When melanomas are detected early, patients have a 98% five year survival rate, but if the cancer has spead to the lymph nodes and other parts of the body, survival rates drop to a mere 16%*. Because of its origins in the skin—where doctors and patients can see it—melanoma should be one of the most easily recognized and detectable of all cancers. Unfortunately, barriers still exist to early detection of melanoma. During Tier 1, we learned that many patients don’t know what to look for when conducting a skin self-exam. Other barriers to early detection and treatment may include a lack of knowledge that melanoma can be life-threatening, poor/no insurance coverage, lack of transportation/distance to a provider, and treatment by a doctor that lacked expertise in melanoma.

During Tier 1, we began building an “army” of volunteers to attack melanoma prevention from new angles and perspectives. Our greatest accomplishment during the nine-month award period was to support the launch of the Melanoma Community Registry at Oregon Health & Science University. As of January 2015, the Melanoma Community Registry had 2,374 patients, 446 family members of patients, and 146 friends of patients signed up. As director of the project, I contributed by participating in brainstorming meetings, drafting text for recruitment materials, reviewing informed consent language, appearing in TV and newspaper articles promoting the registry, promoting the registry at community events such as the Portland Melanoma Walk, as well as cost-sharing IT development.

In this next phase, we plan to build upon the progress we made in Tier 1, with the ultimate goal of working toward a large-scale research study in collaboration with researchers at OHSU. Specifically, we plan to use surveys and focus groups to identify issues that are the most crucial to melanoma patients and those who care for them. We are also continuing to develop our network and would love to meet others with an interest in contributing to this effort. Want to get involved? Send me a note at info@solsurvivorsusa.org.

View this video to learn more:


PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

*National Cancer Institute SEER

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    Here in this section, we have mentioned the NIOS online admission procedure and how to fill the NIOS online admission form. So let us get started.

    Step 1- Go to the NIOS official website, click on "Register," and follow the procedure given on the screen.

    Enter your basic details, including your name, father and mother name, date of birth, gender, aadhaar card number, mobile number, email ID, and the course you want to opt for.

    Once you have filled in your details, you need to enter an OTP sent to your registered mobile number and email address.

    Once you have filled in all the details on the screen, tick on the declaration and go ahead.

    Step 2- Once you have filled in your basic details, fill in your optional details like nationality, religion, annual family income, and more.
    Step 3- Choose the subjects you want to apply for.
    Step 4- Select the nearest study center. You need to select three study centers according to your preferences.
    Step 5- Upload the documents required for NIOS admission. You need a signature document, ID proof, previous qualification certificate, address proof, and a caste certificate.
    Note- These files need to be in the JPEG/JPG/PNG/GIF format. The file size should not exceed 1MB.
    Step 6- Review all the details before submitting the NIOS online admission form.
    Step 7- Pay the NIOS admission fees by your preferred mode of payment and click on register.
    Step 8- Once you have made the payment, you will be directed to an acknowledgment page.
    Tip- Take a printout of your NIOS application form for your future reference.

    NIOS Admission Confirmation

    The officials will notify the confirmation of the NIOS admission 2021-2022 by issuing an official ID card for the NIOS registered course along with a confirmation letter.

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