In 2018, the Gordon and Marilyn Macklin Foundation and NAF partnered on a critical project for the Ataxia community: A relaunch of the Clinical Research Consortium for the Study of Cerebellar Ataxias, better known as the CRC-SCA Natural History Study. The CRC-SCA is an ongoing clinical study that aims to understand how the most common Spinocerebellar Ataxias (SCAs) progress in individuals over time.
Clinical research is expensive, especially when that research involves hundreds of in-person visits. When federal funding for the CRC-SCA stopped in 2018, this multi-site project was reborn thanks to the generosity of the Macklin Foundation, who provided nearly $1 million dollars over three years. Thanks to these essential funds, the CRC-SCA experienced a revitalization and continues to recruit patients today.
In addition to the Macklin Foundation, NAF would like to thank all of the study participants who have generously committed time, resources, and dedication to this important natural history study. The patient data collected from CRC-SCA has helped Ataxia researchers and drug developers better understand these diseases and design more efficient clinical trials for potential Ataxia therapies.
Significant endeavors that would not have been possible without this funding included:
- Over 250 CRC-SCA patient visits
- Addition of two new clinical sites
- Expanded biosample collection, including plasma, serum, and cerebrospinal fluid (CSF)
- Two collaborative workshops with principal investigators, NAF, and leaders in Ataxia drug development
- Increased pharmaceutical interest and financial support for CRC-SCA natural history study data collection
- Implementation of a patient portal to decrease time spent at a visit appointment
- 10 Research Articles and Reviews published since the inception of the CRC-SCA Natural History Study
- Read some of them for FREE here:
- Depression and Clinical Progression in Spinocerebellar Ataxias (Lo et al., 2016)
- Coenzyme Q10 and Spinocerebellar Ataxias (Lo et al., 2015)
- Postural Tremor and Ataxia Progression in Spinocerebellar Ataxias (Gan et al., 2017)
- Read some of them for FREE here:
NAF would like to express sincere gratitude towards the Gordon and Marilyn Macklin Foundation. It is through the Macklin Foundation’s generosity and commitment that the stamina of the CRC-SCA consortium strengthened during the award period.
Stay tuned for a series of blogs discussing what has been discovered from the CRC-SCA data!
