Managing Friedreich’s ataxia
Integrating disease assessment tools with multidisciplinary insights can help monitor progression and optimize patient outcomes.
Measuring what matters in Friedreich’s ataxia (FA)
There are a variety of tools and assessments used to measure the progression and severity of FA, including mobility tests and quality of life assessments.1-3
Common tools used to evaluate FA include1-3
- Friedreich Ataxia Rating Scale (FARS), modified FARS (mFARS), and Scale for Assessment and Rating of Ataxia (SARA)
- A timed 25-foot walk test or 9-hole peg test
- Patient-reported outcomes (PROs), such as Friedreich Ataxia Rating Scale-Activities of Daily Living (FARS-ADL), and Modified Fatigue Impact Scale
A closer look at mFARS
mFARS comprises 4 subscale assessments developed to measure neurologic function over time: bulbar, upper limb coordination, lower limb coordination, and upright stability2,4
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Bulbar assessment measures the strength and volume of a patient’s coughing and clarity of speech
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Upper and lower limb coordination assessments measure the fine motor coordination of arms and hands and the coordination of legs and feet
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Upright stability assessment measures a patient’s loss of ambulation and impaired ability to coordinate voluntary movements
Upright stability is one of the strongest predictors of time to loss of ambulation.5
In a national survey of 50 physicians who treat patients with FA: 94% agree the time-sensitive nature of FA progression requires a robust toolbox of monitoring and assessment strategies.6
Managing FA takes a multidisciplinary team
Recognizing the range of specialists involved in FA management is essential for ensuring coordinated, patient-centered care. Due to the multisystem nature of the disease, effective treatment depends on communication among providers—neurologists, cardiologists, therapists, and others—so that interventions are aligned and complications are addressed proactively.7
Morgan, 37. living with FA
Devoted wife and mother.
Dedicated ambassador.
Unstoppable spirit.
What’s missing in FA treatment?
Research is ongoing to help develop treatments that address the root cause of the disease—frataxin deficiency—and not just the downstream effects.8
In a national survey of 50 physicians who treat patients with FA: 94% agree there are still patient needs that are not being met in FA treatment.6
In a national survey of 50 physicians who treat patients with FA: 98% believe there is a need for a treatment that targets frataxia levels directly.6
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Connect with the community
Additional sources are available to support you and your patients in understanding and managing FA and to help you find opportunities to engage in clinical research or community initiatives.
The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), nonprofit organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia.
The National Organization for Rare Disorders (NORD®)* is an independent, 501(c)(3) nonprofit dedicated to individuals with rare diseases and the organizations that serve them.
The National Ataxia Foundation (NAF) is a nonprofit organization dedicated to accelerating the development of treatments and a cure while working to improve the lives of those living with ataxia.
*NORD and the NORD logo are registered trademarks of the National Organization for Rare Disease. NORD is a registered 501(c)(3) charity.
Keeping up with the latest research and clinical management guidelines is key to providing the best care possible to patients affected by FA.
