Thoughts questions, and feedback on surveys from The OT Survey Team

Moderator: gloria

#6209
Exciting News from the OT Survey Team! Below is their letter to the OT Community about their soon to be available survey "Symptoms and Diagnosis of Orthostatic Tremor".

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Dear Orthostatic Tremor Community,

This is a ‘heads-up’ about our new survey that we plan to make available as early as next week!

Last year, a few of us in the OT Community created a survey about Prescribed Medications and Alternative Therapies. Many of you participated in this survey. We were very pleased with the response and got positive feedback from doctors who reviewed the final presentation. If you did not see the final presentation, it can be found here https://www.orthostatictremor.org/…/OT_ ... ril2018v01.… and on the www.orthostatictremor.org website.

We are ready to issue a second survey on Symptoms and Diagnosis of Orthostatic Tremor, based on the list of requested topics we received for future surveys when we conducted the first survey. We would like to get as many participants as possible to join in this next survey. We have reached out to several OT website and FB administrators and are pleased to say that they are assisting us in getting the word out about the upcoming survey. If you are a member of more than one group, you will get/see many different communications about this survey, such as a personal email or a multitude of different world-wide Facebook posts. You only need to fill out the survey once. When looking at all the sites, there appears to be over 1000 members. It is our hope that we can get feedback from close to 500 (or more!) of us to participate from around the world.

We used Survey Monkey last year and were very pleased with the program as well as the minimal cost. It also respects the confidentiality of all those that participate in the survey, as Survey Monkey does not pass along email addresses with the completed survey. In the next few days, you will receive an email or Facebook invitation with a link to take the survey. The survey will be open for 2-3 weeks. We will also be sending out a reminder towards the closing date. The survey will take approximately 30-40 minutes to complete. There are a few questions that may take a little longer to answer, so we thought it would help to speed things up if we listed them now so you can look up any info prior to taking the survey:

- Age symptoms started; age when you first went to a doctor for these symptoms; age when diagnosed
- What were the symptoms that made you go see a doctor the first time
- What types of doctors you have seen; how many did you have to see before getting a diagnosis
- What was your original diagnosis, as well as different diagnoses you received
- Different tests you had (e.g., EMG, NCS, MRI, etc)
- The severity of the symptoms you had at onset and the severity of them today
- Medical issues/treatments, etc., that you feel may have contributed to the onset of OT
- There will also be an opportunity to share any comments/feedback

Just as a little background, two of the people who worked on the survey, Annetta Muir and Pam Cirincione, have OT. The third person is Mike, Annetta’s husband. Mike and Pam created the survey. Annetta, who is a retired registered nurse, acted as a medical consultant and assisted in reviewing the survey as it was being built. We also reached out to a couple of doctors for feedback. We volunteered our time to create this survey. There are several reasons why we do these surveys. One reason is that it provides a way to get a current count of how many people have been diagnosed with OT. It also provides a resource for anyone searching for information on OT, such as those newly-diagnosed, those who have already been diagnosed, caregivers, friends and family members, and researchers who may be looking for something that will guide them in their next steps in determining what causes OT. The survey results can be used to educate any member of a person's medical team. It also helps spread the word about a disease that is still relatively unheard of (even in the medical community), often misdiagnosed, and its effect on the quality of life underestimated for those afflicted and for their caregivers. We are fortunate to have some doctors who are trying to help us, and we also need to help ourselves in any way possible.

We look forward to receiving a lot of completed surveys! Thank you in advance for participating. Please feel free to email us at OrthostaticTremorsSurveys@gmail.com with any questions or concerns.

The OT Survey Team,
Mike, Annetta and Pam
#6218
The OT Survey #2 : Symptoms and Diagnosis is ready!

The results are 100% confidential and the survey can be completed using any type of computer, tablet or smartphone.

The survey should take about 30-40 minutes to complete. After you finish each page, you need to hit the 'Next' button to save your progress and continue with the survey. You also have the option to go back to prior pages by hitting the 'Prev' button. If you cannot complete the survey all at once, you can can close it and re-open it from that point by using the link you received via email or a Facebook post.

Please try to complete it as soon as possible. The survey will end on May 24. After that date the survey will no longer be available to complete.

Although you may have received more than one notification and/or invitation about the survey, please fill out the survey just once.

If you want to share this survey with another member of the OT community who did not receive the link, you can send us a separate email request at OrthostaticTremorsSurveys@gmail.com, or you can share the Facebook link or forward the email you may have received to them.

Below is the link to view and begin the survey:

https://www.surveymonkey.com/r/OT-Surve ... -Diagnosis

Your feedback is very important to the OT community. Thank you for participating and helping to expand our understanding and awareness of Orthostatic Tremor.

Best Regards,

The OT Survey Team
Mike, Annetta and Pam
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