# Received from CoRDS-rare diseases **URL:** \ **Category:** News, Research, and Clinical Trials\ **Created:** [October 15, 2018, 8:49pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017 "2018-10-15T20:49:19Z")\ **Posts on this page:** 10\ **Page:** 1
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [October 15, 2018, 8:49pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/1 "2018-10-15T20:49:19Z")
It’s self-explanatory. I filled it out but it’;s up to you. [https://www.surveymonkey.com/r/AtaxiaIllnessRepresentation](https://www.surveymonkey.com/r/AtaxiaIllnessRepresentation) ---
**Author:** ![lin-da](https://avatars.discourse-cdn.com/v4/letter/l/3da27b/32.png) [@lin-da](https://forum.livingwithataxia.org/u/lin-da)\ **Post date:** [October 15, 2018, 9:34pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/2 "2018-10-15T21:34:46Z")
Thank you but Im not filling it out only because Im not comfortable with my medical history being available online. But thank you. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [October 15, 2018, 10:50pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/3 "2018-10-15T22:50:04Z")
Just so you know, I understand your reluctance but absolutely NO personal information is given. ---
**Author:** ![hutchy-10](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/hutchy-10/32/3534_2.png) [@hutchy-10](https://forum.livingwithataxia.org/u/hutchy-10)\ **Post date:** [October 16, 2018, 1:44pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/4 "2018-10-16T13:44:15Z")
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. ---
**Author:** ![Linda4](https://avatars.discourse-cdn.com/v4/letter/l/ec9cab/32.png) [@Linda4](https://forum.livingwithataxia.org/u/Linda4)\ **Post date:** [October 16, 2018, 8:42pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/5 "2018-10-16T20:42:34Z")
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. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [October 16, 2018, 9:28pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/6 "2018-10-16T21:28:43Z")
You do not use drugs. The question referred to illegal stuff. ---
**Author:** ![Patsy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/patsy/32/3_2.png) [@Patsy](https://forum.livingwithataxia.org/u/Patsy)\ **Post date:** [October 19, 2018, 6:47pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/7 "2018-10-19T18:47:57Z")
done thank you for the opportunity ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [July 8, 2020, 12:52am UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/8 "2020-07-08T00:52:47Z")
Bumped especially for the newer members. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [July 9, 2020, 3:29pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/9 "2020-07-09T15:29:19Z")
I see that the link in the opening post has expired. Go here: [https://research.sanfordhealth.org/rare-disease-registry](https://research.sanfordhealth.org/rare-disease-registry) ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [July 23, 2020, 2:15pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017/10 "2020-07-23T14:15:03Z")
Good idea for all to register.