REN Survey III

In September 2013, we sent out a survey about the possibility of participating in a Rare Epilepsy Network (REN). We are pleased to report that the REN has been funded by the Patient Centered Outcomes Research Institute (PCORI).

This survey is to provide information for the REN. The purpose of the network is to allow persons diagnosed with a rare epilepsy disorder or their caregivers to put health-related information about the person with epilepsy into a database. When many people put such information into a database, it becomes much easier for scientists and health care providers to answer important questions about each rare epilepsy disorder, as well as, about the whole group of rare epilepsies. To be successful, the database must have the input and support of those people who have a rare epilepsy disorder or who have a personal relationship with someone who has a rare epilepsy disorder. To ensure the REN collects data that will help answer questions that are important to you, we need your help in answering the questions below.

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* 1. When considering what kind of questions you would like answered, which of the following three topics are MOST important to you?

1. Ability to perform daily living tasks

2. Usefulness of therapies such as physical, occupational, or speech therapy

3. Quality of life for the person with epilepsy and their family

4. Financial problems encountered because of the disorder

5. How well the person with the disorder can expect to do over time (i.e., prognosis or expected course)

6. Finding the cause of the rare epilepsy disorder

7. Safety issues related to epilepsy (e.g., SUDEP, injury during a seizure)

8. Seizures that don’t stop (e.g., seizure clusters or status)

9. Effectiveness of complimentary therapies such as herbal remedies, music or art therapy

10. Changes in seizure frequency

11. Conditions other than seizures that occur with the disorder:

a. Developmental issues related to the disorder

b. Behavioral issues related to the disorder (including autism, ADHD, PPD)

c. Other (non-epilepsy) health/medical issues related to the disorder (e.g. sleep problems, orthopedic, GI, cardiac etc.)

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* 2. What kinds of questions would you like researchers to answer? For example, would you like to see a researcher answer questions about causes of the disorder, or answer questions about treatments, or some other aspect of the disease?

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* 3. What are the most important one or two questions that you would like to have answered?

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* 4. We would also like to ask you about outcomes or impact that you would like to occur as a result of collecting and analyzing these data. Examples of outcomes are better quality of life, lowered seizure frequency, and fewer behavior problems. Think about what outcomes you consider important and would like to most like to see from the collection and analysis of health-related information from those affected by rare epilepsy disorders. What is the most important outcome to you?

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* 1. When considering what kind of questions you would like answered, which of the following three topics are MOST important to you?

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* 2. What kinds of questions would you like researchers to answer? For example, would you like to see a researcher answer questions about causes of the disorder, or answer questions about treatments, or some other aspect of the disease?

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* 3. What are the most important one or two questions that you would like to have answered?

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* 5. What is the second most important outcome to you?