Dear Patient Participant in the USCLC Registry:
The USCLC appreciates and encourages your participation in the national USCLC Registry of patients with cutaneous lymphoma. All data entered into the Registry starts with your study doctor reviewing the goals and specifics of our Registry and getting your consent to enter your specific data. The goals of this Registry are many and include the following including those that specifically target your input (highlighted).
Purpose of the USCLC Registry:
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To determine the incidence and geographic locations of patients with the various subtypes of cutaneous lymphoma in the US
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To determine and validate factors for each type of cutaneous lymphoma that may affect prognosis
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To determine the efficacy of various treatments or interventions for patients with each subtype of cutaneous lymphoma
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To enable patients with the various subtypes of cutaneous lymphoma to input data on the effect of their disease and treatment(s) on their and their families’ quality of life
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To enhance the communication between patients with cutaneous lymphoma and the physicians directing their care
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To compare and contrast treatment algorithms between study sites
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To develop and validate new quality of life metrics for patients with cutaneous lymphoma
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To develop meaningful outcome measures that are of value to physician and patient alike
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To provide a platform for clinical trials of patients with cutaneous lymphoma to facilitate collaborative research with other national and international organizations
Included under this Registry tab is a copy of the Registry protocol and a copy of the Registry consent form. In order to send you questionaires that allow you to give feedback on your response to treatment and effect of this lymphoma on your quality of life, you must have checked off in the consent form that you are willing to share your email address. The USCLC will email you from time to time if there are documents for you to review or fill out online on the Registry Patient Portal. When you then receive such notices, you will be able to access the Patient Portal with the use of your email and unique study number (that your study doctor has provided you with) by clicking on this link: https://www.answersahead.io/auth/login?tenant=usclc.
Again, thank you for participating in the USCLC Registry.
Sincerely,
Elise A. Olsen, MD
USCLC Registry Chairman
and
Alejandro Gru, MD
President, USCLC
USCLC Registry Patient Portal
