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All About Cerebral Spinal Fluid (CSF) Donation

DISCLAIMER: The information provided in this article is for informational use only. NAF encourages all readers to consult with their primary care provider, neurologist, or other healthcare provider about any advice mentioned.

Deciding whether to donate cerebral spinal fluid (CSF) is a very personal, but impactful decision. In the video below, David Brunnert shares a little bit about what CSF is, his experience donating CSF, and why he chose to donate.

David comes from an SCA3 family.  In 2018 he joined the READISCA study and became a Board Member of NAF.  In 2019 he was diagnosed as negative for SCA3, but he continues to work tirelessly for those affected by all forms of Ataxia.

What is the CRC-SCA Natural History Study

  • The Clinical Research Consortium for the Study of Cerebellar Ataxia, or the CRC-SCA, is NAF’s natural history study that works to better understand the factors that determine disease progression among Cerebellar Ataxia.
  • Drug Development experts and researchers appreciate annual participation in the CRC-SCA in order to assess disease manifestation over time.
  • If interested, or if you have specific questions about eligibility, please contact the site coordinator nearest you. View our map and coordinator list here.Research collaborators who are willing and able to undergo a lumbar puncture to donate cerebrospinal fluid (CSF) for research will be given a monetary stipend.

Why would I donate CSF to the CRC-SCA or another study?

  • Donating CSF, while optional, is very impactful! These samples are directly used to discover treatments for Ataxia.
  • Please also note, that whether you decide to donate CSF or not, your participation in research and the CRC-SCA is still very important and valuable to finding treatments and cures for Ataxia.

What are the three most likely scenarios of CSF donation?

  1. The most likely scenario is that everything goes smoothly, and the sample is in good shape to be used for research.
  2. An individual comes to donate CSF, but unfortunately there is an unsuccessful draw. This is disappointing but coordinators and other medical professionals work hard to avoid an unsuccessful draw.
  3. There is a successful draw, however, a side effect may occur. The most common side effects are: post-lumbar puncture headache and/or back discomfort.

Tips for feeling good after a CSF draw:

  • Stay hydrated.
  • You can have caffeine after the draw.
  • Ibuprofen or other pain relief can be taken to help alleviate any muscle soreness that may occur.
  • Take it easy!

Watch this video for more about a CSF donation and how it is used for the CRC-SCA

Have a question regarding clinical trial readiness? Ask it here: PrepRARE Topic Suggestion

Other Resources:

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