Volunteering for Clinical Trials

I’ve been looking at the clinical trials and it appears that all of them require that the person knows what type of SCA they have. I’ve never been tested [I don’t care what type only a cure} so I guess that I can’t volunteer.

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I’m in the same boat. I’ve never been called or contacted despite me being registered for 5 fricking years . I’m getting real frustrated!

All SCA 's have different onset age and genetic manifestations have been different, even though the common denominator is ATAXIA. The cure or any treatment for hereditary SCA , if ever found, may have different improvement for different SCA. If you are 65 or older, Medicare will pay for your genetic testing, otherwise it may become quite expensive.

I’m on Medicare. What do I need to do and who? Thanks.

Your Neurologist has to order for the test ( Gene testing for SCA) . Before the company sends you the kit for the blood test, give them your medicare number. Make sure you don’t owe the company anything if medicare approves.

Could you please be more specific in what you mean here?

Before the company sends you the kit, they will call to verify your address and insurance. At that time, when you give them your medicare number, you can ask about the cost of the test and how much anything you owe if medicare approves the test.

I had my testing done through a genetic counselor. She sent me to lab for blood draw and I didn’t pay anything. Indiana University. Not sure if my insurance paid or what. All I knew was it was inherited.

STILL RECRUITING: University of South Florida is STILL running a clinical trial for SCA 1, 2, 3, 7, & 10. They hope to complete enrollment by February - March 2020. THEY COVER ALL TRAVEL EXPENSES (flight, car rental, and hotel PLUS a stipend) for you and a caregiver.

Let’s be part of the cure!!! SPREAD THE WORD!!!

Contact Mary for more information.

Mary Freeman, LPN

Research Coordinator

USF Ataxia Research Center

PHONE: 813-974-4685

NEW EMAIL: mfreema4@usf.edu

Clinical Trial Update Regarding Synchrony-1 Study

A phase 2 clinical trial for Spinocerebellar Ataxia, Synchrony-1 Study, recently updated their status with ClinicalTrials.gov from recruiting to suspended. Below is a note from one of our industry partners, Cadent Therapeutics, about postponing the trial.

Note from Cadent Therapeutics

Dear Ataxia Community,

At Cadent Therapeutics, our mission is to discover and develop innovative treatments to restore brain rhythms and improve outcomes in patients living with movement, mood, and cognitive disorders. 2020 started off with hope and promise of initiating our Phase 2 clinical trial in patients with Spinocerebellar Ataxia. Due to the COVID-19 pandemic, we have decided to postpone the Phase 2 clinical trial, titled Synchrony-1 Study, in order to ensure the safety of the patient community. Over the coming months, we will reevaluate the situation and determine the next steps. Please continue to monitor our website, www.cadenttx.com as well as www.clinicaltrials.gov for the most up-to-date information. We thank you for your support and understanding during this challenging time.

Learn More

National Ataxia Foundation: 763-553-0020 naf@ataxia.org www.ataxia.org

Connecting Ataxia Families, researchers, clinicians, and the community.

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Anyone know anything about CAD 1883?

Copied from www.clinicaltrials gov re CAD 1883

ClinicalTrials.gov Identifier: NCT04301284

Recruitment Status : Suspended (Suspended due to COVID-19)

First Posted : March 10, 2020

Last Update Posted : April 13, 2020

Yes I know. I was wondering, if anyone has any personal experience

I have refused with Johns Hopkins to go for a third year with BHV 4157 Because the study drug has failed to improve any of my symptoms, there is increased risk in flying and my physical disability makes it difficult. If any of the items listed above was positive, I would have continued the study.

You have to do what you have to do.

:thinking: I’m sorry to hear you’re unable to continue. Having already completed 2yrs, were you told whether your ‘prescription’ was for Troriluzole, or a placebo. I recall reading, after taking part in the trial for a certain length of time, some people were specifically told they were being given Troriluzole.

For the first three months, I might have received placebo. But after that, I received the real drug

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Scientists are experimenting with dead virus to change the DNA in a cell. Anyone else have more knowledge about it?

:thinking: Is this connected to bringing back extinct virus’s

I have thoughts of Jurassic Park and Outbreak.