CURE OM Patient Registry Survey

Description

The CURE OM initiative is preparing to launch a patient registry in 2017 and would greatly appreciate input from the ocular melanoma community. This input is integral to the development and implementation of a successful registry. To this end, CURE OM has assembled an advisory working group. Together with advisory group members, CURE OM seeks input from the broader community. Your answers to the list of questions below will help CURE OM develop an effective registry with strong and relevant objectives. For more information about the registry, please click here.

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* 1. The goal of the CURE OM patient registry is to develop a centralized and secure online database that will collect, store and produce reports for research analysis to better understand ocular melanoma. Below is a list of objectives that we hope to achieve by having a registry. Please prioritize the objectives from most favorable to least, using the numbers 1-8. 1 being the most important and 8 being the least important.

1. Improve epidemiologic understanding of ocular melanoma (i.e. incidence, risk factors, etc.)

2. Increase likelihood of development of effective treatments

3. Provide information to help develop standards of care at different stages

4. Increase collaborative efforts between patients, clinicians, and researchers

5. Increase understanding of patient preferences and quality of life factors at different stages.

6. Inform research priorities (including defining new opportunities for additional research areas for existing OM researchers and attracting new investigators into the field)

7. Provide longitudinal view into relationship between genotype and phenotype

8. Inform policy

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* 2. In order for the registry to collect the information to inform the objectives listed in Question #1, we will need patients to periodically input information over the course of the patient's disease. Would you be willing to add data to the registry?

Yes

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* 3. If you answered "Yes" to Question 2:
At what frequency would you be willing to add data to the registry?

Quarterly

Twice a year

Annually

Other (please specify)

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* 4. If you answered "Yes" to Question 2:
How much time would you be willing to spend when inputting data into to the registry?

Less than 30 minutes

More than 30 minutes

1 hour

More than 1 hour

Other (please specify)

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* 5. Would you be comfortable providing your consent for researchers to study the patient’s tumor material through this registry?

Yes

If "No", please explain.

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* 6. As a user, what features and functions would you like the registry to have when entering data into the system?

easy to use

registry news features

information about past and current research

trials to participate in

forum to share your thoughts and experience,

display of data results

Any other suggestions:

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* 7. Below are recognized outcomes for the registry. Please rank in order using, 1-5. 1 being the most important and 5 being the least.

information about current research

results of the data

see the course of the patient’s OM and treatment over time

current clinical trials to participate in

being able to share your experience and thoughts about the research with the research team and other participants in the registry

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* 8. Are you participating in any other registries or research projects for ocular melanoma?

Yes

If "Yes" Please Expand:

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* 9. Are there any other patient-centered research initiatives you’d like to see CURE OM pursue?

Yes

If "Yes", Please Explain:

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* 10. Are you currently residing in the United States?

Yes

If "No" Which Country do you reside?

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* 11. Do you have any questions for the CURE OM research team?

Yes

If "Yes", please write questions in the space below:

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* 2. In order for the registry to collect the information to inform the objectives listed in Question #1, we will need patients to periodically input information over the course of the patient's disease. Would you be willing to add data to the registry?

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* 3. If you answered "Yes" to Question 2:At what frequency would you be willing to add data to the registry?

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* 4. If you answered "Yes" to Question 2:How much time would you be willing to spend when inputting data into to the registry?

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* 5. Would you be comfortable providing your consent for researchers to study the patient’s tumor material through this registry?

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* 6. As a user, what features and functions would you like the registry to have when entering data into the system?

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* 7. Below are recognized outcomes for the registry. Please rank in order using, 1-5. 1 being the most important and 5 being the least.

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* 8. Are you participating in any other registries or research projects for ocular melanoma?

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* 9. Are there any other patient-centered research initiatives you’d like to see CURE OM pursue?

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* 10. Are you currently residing in the United States?

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* 11. Do you have any questions for the CURE OM research team?

* 3. If you answered "Yes" to Question 2:
At what frequency would you be willing to add data to the registry?

* 4. If you answered "Yes" to Question 2:
How much time would you be willing to spend when inputting data into to the registry?