Participate in a study (home-based) re PROM Ataxia

[wobblybee]

ALL Ataxians living outside of the U.S. can participate.

Email me : [e-mail] 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.

[cocoa]

Is there a link to this?

I always take part in studies because every little helps.

[wobblybee in reply to cocoa]

🙂 This was the original post sent 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 [e-mail] 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.

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.

[GoPlayer]

Hey wobblybee,

On IARC there was talk about taking this international, but I was under the impression we where not there yet.

Do you know who 'vdenis' is?

Bart-Jan.

[wobblybee]

🙂 Yes, I do know. But, the person to email is [e-mail] I emailed her myself. She confirmed this study was open to any ataxian, anywhere, and emailed me forms to complete for the study.

After completion, the forms can be mailed direct to Schmahmann Lab, Boston, US or scanned and emailed to Mary, who will delete your email address to preserve anonymity.

[february]

Who is eligible to participate in this study, as it says anyone outside of the U.S. Please confirm this for me...,thank you!

[wobblybee in reply to february]

Hi R 🙂 Anyone, anywhere 👍 But you don’t fill in online. The forms are emailed to you, and will need to be printed in order to fill in.

[turner47]

Yes i would like to take part. I have a late onset of FA. Started at 50yrs old now 72yrs old

[wobblybee in reply to turner47]

👍 🙂

[turner47 in reply to wobblybee]

What happens now

[wobblybee in reply to turner47]

🤔 We have to send individual requests to join the survey. Send an email to [e-mail] saying you would like to take part in the PROM survey, I mentioned I live in the UK.

When you’ve done that, she’ll email forms back, you need to print them in order to fill them in. The study is in 3 parts, basically it’s just ‘tick a box’. When the forms are complete, you send them back.

[Sablelodge]

I am in South Africa - if You can - count me in - I have FA (SCA1)

[wobblybee in reply to Sablelodge]

🙂 Send an email to [e-mail]

[Sablelodge]

Pity I am in South Africa

[wobblybee in reply to Sablelodge]

🤔 Did you email the contact, did they say you couldn’t take part because of your location.