Cerebrospinal fluid (CSF) could yield important information about HD

Spinal tap group
(L to R) Coordinator Bella De Soriano, Dr. Justin Smock, PREDICT-HD participant Taylor Parish and student employee Melissa Odendahl following the last spinal tap and CSF collection in the PREDICT-HD study.

As of September 2012, many PREDICT-HD participants began to participate in a new piece of the study that our researchers think could lead to some very promising results and tell us things about early HD that we may not be able to find out otherwise.


We collected cerebrospinal fluid (CSF), a fluid that surrounds the brain and spinal cord. Samples were collected at several study sites from participants willing to participate through a spinal tap procedure. Currently, we are not enrolling new participants into the study or conducting study visits to collect additional CSF.


Why collect CSF?

We think CSF may contain a wealth of knowledge about HD progression. Researchers who specialize in genetics have told us that examining the proteins and molecules in CSF may help us further understand HD, and potentially help researchers develop new methods to diagnose and treat HD.


Researchers also want to see if the proteins and molecules in CSF change with HD progression, and see if those changes would respond to treatment. Since CSF surrounds the brain, we can assess the biochemical events that are happening in the brains of living people. It's the only real way to look at brain chemicals in a living person.


Alzheimer's disease and Parkinson's disease researchers also collect CSF from participants and are looking at some of the same things we are looking at in HD.


Gathering CSF in HD could lead to the development of additional clinical trials and treatment options for HD.


Spinal tap procedure

The spinal tap, also known as a lumbar puncture, is a generally safe and routine procedure that involves inserting a needle into ones middle back and removing a small amount of CSF.


Prior to the spinal tap procedure, routine screenings of the participant's blood sample were collected, and a review of the participant's medica history and current medications was performed. Participants were also given a physical exam to make sure that the spinal tap will be safe for the participant. During the spinal tap procedure, the participant lays on his or her side with knees drawn up as far as possible. The doctor injects a local anesthetic or numbing medicine (lidocaine) into the skin on the lower back, and participants feel a brief pinch or sting from the injection.


Once the area is numb, the doctor inserts a very thin needle into the spinal canal in the lower back at the level where the spinal cord ends. 


Complications during the procedure may include headache, nausea, leg pain or a brief period of double vision. Up to 20 percent of people develop a headache 24 hours or more after having a spinal tap. You can take acetaminophen or ibuprofen and rest if this happens, which may help. Participants will be given full instructions to follow after the spinal tap to try and avoid discomfort as much as possible.


If participants experience any problems once they return home, they are encouraged to contact the study doctor, and contact their local doctor or emergency room if they have urgent medical problems.


A big "thank you" to all our participants!

We think the analysis of CSF holds a lot of promise, and we can't make any of the advancements we think are possible through CSF collection without our participants and their willingness to take part and make a difference through HD research.


Links for more information:

  • Cerebral spinal fluid (CSF) collection: From MedlinePlus (a service of the U.S. National Library of Medicine and the National Institutes of Health), this article provides an overview of CSF collection.

External links for informational purposes only; PREDICT-HD cannot attest to the accuracy of information provided by these links.