Participate in a study re PROM Ataxia

General News, Research, and Clinical Trials
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ALL Ataxians living outside of the U.S. CAN PARTICIPATE:

Email me : vdenis@comcast.net for specific details on how you can participate in this study.

All Ataxia’s Are Needed. The Ataxia field desperately needs an Ataxia-specific PROM (Patient Reported Outcome Measure) to monitor issues that are meaningful to patients. Dr. Jeremy Schmahmann’s Lab at Massachusetts General Hospital has developed a PROM-Ataxia and now needs to determine if it is reliable when completed a few times over a month. They are seeking patients with Cerebellar Ataxia who can complete this scale at home, on 3 separate occasions, over a period of 1 month. This will allow them to assess the test-retest reliability of the PROM-Ataxia. For this project, Dr. Schmahmann’s lab needs access to 140 people with Cerebellar Ataxia.

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Why is it for folks outside the US only? Is it an approved study?

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:slightly_smiling_face: This is approved by www.ataxia.org

:slightly_smiling_face: This was the original post sent to people in the US.

All Ataxia’s Are Needed. The Ataxia field desperately needs an Ataxia-specific PROM (Patient Reported Outcome Measure) to monitor issues that are meaningful to patients. Dr. Jeremy Schmahmann’s Lab at Massachusetts General Hospital has developed a PROM-Ataxia and now needs to determine if it is reliable when completed a few times over a month. They are seeking patients with Cerebellar Ataxia who can complete this scale at home, on 3 separate occasions, over a period of 1 month. This will allow them to assess the test-retest reliability of the PROM-Ataxia. For this project, Dr. Schmahmann’s lab needs access to 140 people with Cerebellar Ataxia. If you are interested in participating, please email Mary Ann Peterson, NAF’s Research Assistant at mary_peterson@ataxia.org so that she can mail you the PROM-Ataxia questionnaire to fill out and mail back to Dr. Schmahmann’s Lab. You will need to provide your postal address in your email to Mary Ann.

:slightly_smiling_face: This Study is open to all Ataxians, anywhere. I live in the UK, I emailed Mary Peterson and she emailed back forms to print out and complete. Email addresses will be deleted to preserve anonymity.

Thank you for your willingness to participate in this study.

There is a YouTube video explaining exactly what PROM Ataxia means. Google ‘YouTube PROM Ataxia’ to listen to an interview with Dr Schmahmann