Received from CoRDS-rare diseases

It’s self-explanatory. I filled it out but it’;s up to you.
https://www.surveymonkey.com/r/AtaxiaIllnessRepresentation

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Thank you but Im not filling it out only because Im not comfortable with my medical history being available online. But thank you.

Just so you know, I understand your reluctance but absolutely NO personal information is given.

I completed the survey.
As Chas mentioned, in no way does this questionnaire ask or require any personal information.
Some very simplistic medical history questions are asked, however, they are general and do not lead to any personal information being compromised. It does appear to be completely anonymous.
I completed this survey in the interest of contributing to ataxia research and with hopes that it will somehow assist in the discovery of some sort of treatment or cure. Even though I may not personally benefit from such discoveries, at least I have contributed vs. doing nothing.
But again it is up to individual discretion. There should no shame or guilt for not completing the survey, it’s completely up to the individual to participate or not.

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One comment on the survey. It asked if I use alcohol or drugs to cope. I said no because I do not use alcohol or illegal drugs. I do use a percsribed anti-depressant to cope with depression, which is a common symptom. I assumed you did not mean that although it is technically a drug that I use to cope.

You do not use drugs. The question referred to illegal stuff.

done thank you for the opportunity

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Bumped especially for the newer members.

I see that the link in the opening post has expired. Go here:

https://research.sanfordhealth.org/rare-disease-registry

Good idea for all to register.