What is the Ataxia Patient Registry?

Author: Sue Hagen, Patient and Research Services Director

A Community Mobilized Toward Treatments

One of the goals of a disease-specific patient organization is to provide resources that will help in the discovery of treatments for their disease. And that is absolutely true of the National Ataxia Foundation. We want treatments and cures for our patient community. We have been fighting for that since the founding of NAF in 1957.

What we have learned from other patient groups and from our industry partners is that treatments cannot be discovered and approved without the dedicated efforts of the patients themselves. I believe our Ataxia community is amazing in helping NAF raise funds, awareness and support for others with Ataxia. You attend conferences, organize fundraisers, are actively involved in bringing awareness of Ataxia to your inner circles and beyond. You are members of the NAF; you contribute to our social media networks and offer great ideas and suggestions for the National Ataxia Foundation to become successful. I thank and applaud you for all the other activities you are involved with of which I am not even aware!

How the Ataxia Patient Registry Affects Research

There is one thing that I am fully aware of each month, and that is the number of those in our Ataxia community who have enrolled in the CoRDS Ataxia Patient Registry. At the end of each month I receive a report from CoRDS. We track those enrollment numbers diligently. Why do we do this?

Because if we are to be successful in bringing treatments to the clinic, we need a robust, well-populated patient registry for recruitment into the clinical trials that will be sponsored by pharmaceutical companies in the upcoming months and years. Many companies are in early and mid-stage development of drugs that will treat Ataxia, but they will need patients to test those drugs in clinical trials. There are many approaches to recruitment, however the most efficient recruitment tool is to become a member of NAF for free and join the CoRDS Ataxia Patient Registry.

We set a goal in 2018 to have 2,019 enrolled in CoRDS by 2019. Current enrollment at the end of June 2019 is at 1,881, so we only need 138 more to be enrolled to reach our goal. But we need to surpass that goal! A common question from a pharmaceutical company when they are embarking on development of a drug is, “What is the number of individuals affected by the disease?” The prevalence of Ataxia in the U.S. and the world is difficult to actually determine. Historically NAF has reported that there are up to 150,000 individuals affected with Ataxia in the U.S. If that number is true, we can get many more enrolled in the registry.

Facts About the Ataxia Patient Registry

Here are some interesting stats from the CoRDS Ataxia Patient Registry

  • The top two states for enrollment are California with 171 and Texas with 103.
  • All fifty U.S. states have a least one participant enrolled
  • 254 enrollees are from countries other than the United States with Canada having the most, followed by Australia
  • 104 enrollees are under the age 11 years old
  • SCA3 has the largest enrollment with 227 individuals, followed by SCA6 with 160 individuals

To the 1,881 individuals who have enrolled in the registry, we say, Thank you! If you have not enrolled, please click on this link to begin the process. If you have any questions or difficulties or would prefer to enroll by hardcopy and postal mail, the CoRDS staff is available to assist by contacting them at cords@sanfordhealth.org or 1 (877) 658-9192.

Find research studies and clinical trials that are currently recruiting

 

 

1 thought on “What is the Ataxia Patient Registry?

  1. Hello, I am looking for studies and treatments for ARSACS (Autosomal Recessive Spastic Ataxia of Charlevois Sagenay) I am a patient with SCA, had since birth, diagnosed early 30s, ARSACS diagnosis 2018.

    Thanks
    Paul

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