# Patient Registry - Please join today! Repost

**URL:** <https://forum.livingwithpsc.org/t/patient-registry-please-join-today-repost/2686>\
**Category:** Life with Primary Sclerosing Cholangitis\
**Created:** [September 20, 2018, 2:29pm UTC](https://forum.livingwithpsc.org/t/patient-registry-please-join-today-repost/2686 "2018-09-20T14:29:55Z")\
**Posts on this page:** 3\
**Page:** 1

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**Author:** ![mcdona](https://avatars.discourse-cdn.com/v4/letter/m/e36b37/32.png) [@mcdona](https://forum.livingwithpsc.org/u/mcdona)\
**Post date:** [September 20, 2018, 2:29pm UTC](https://forum.livingwithpsc.org/t/patient-registry-please-join-today-repost/2686/1 "2018-09-20T14:29:55Z")

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Reposting from mom\_to\_psc\_teen ('14):

To those of you who haven’t heard, or are newly diagnosed, please join the patient registry. We need each and every PSC patient to participate to help the researchers find a cure. The PSC Partners Patient Registry was established in collaboration with the National Institutes of Health (NIH) [The Office of Rare Diseases Research](http://rarediseases.info.nih.gov/).

You can find out more here [https://pscpartners.patientcrossroads.org/](https://pscpartners.patientcrossroads.org/) including information about how your identity and private information will be de-identified before releasing anything to researchers.

It doesn’t take long - and there are very kind people who will help you if you run into any problems.

Please take the time to help! For us and for yourself!

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**Author:** ![janieg40](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/janieg40/32/1436_2.png) [@janieg40](https://forum.livingwithpsc.org/u/janieg40)\
**Post date:** [September 24, 2018, 7:47pm UTC](https://forum.livingwithpsc.org/t/patient-registry-please-join-today-repost/2686/2 "2018-09-24T19:47:57Z")

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I am taking part in research with Henry Ford in Detroit as a patient with PSC and UC for many years in hopes they will find help for those in the future with this awful disease.

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**Author:** ![mcdona](https://avatars.discourse-cdn.com/v4/letter/m/e36b37/32.png) [@mcdona](https://forum.livingwithpsc.org/u/mcdona)\
**Post date:** [September 25, 2018, 6:54pm UTC](https://forum.livingwithpsc.org/t/patient-registry-please-join-today-repost/2686/3 "2018-09-25T18:54:57Z")

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Janieg40, That’s great. I hope they are successful in finding something soon. I am still reeling over what this means for our eight year old daughter and her recent diagnosis. Thank you for being part of the research.

take good care