Web exclusive: Participant proud of first CSF contribution

The following is an extended version of the article titled "Participant proud of first CSF contribution," published in the Issue 1, 2013 edition of the PREDICT-HD Press.


When asked by PREDICT-HD Coordinator Pat Ryan if she'd be willing to undergo a spinal tap procedure at The University of Iowa in order to collect cerebrospinal fluid (CSF) for the study, participant Lori Frantz immediately said yes.


Lori Frantz"I think it's such a great idea," said Frantz (pictured right), who was the first study participant to participate in the CSF collection. "Since they can't examine living brain tissue, it's something I had thought about in the past."


At sites where spinal taps are being conducted, PREDICT-HD participants are being asked prior to their visit if they are interested in taking part in the optional CSF collection. Coordinators provide information and a video about the spinal tap procedure for those who are unfamiliar.


Pat Ryan"Most participants prefer to have some time to think about it and watch the video and discuss it with their family, which we encourage," Ryan (pictured right) said. "And those who have agreed to do it have indicated that they want to do anything they can to advance the study and advance understanding of this disease."


As with many things in life, Frantz said the thought of the spinal tap was worse than the actual procedure in terms of discomfort. She said the needle used to numb her lower back was painless. She described feeling pressure when the tap was inserted, but said it wasn't painful. The physician kept her updated on how long it might take and the rate at which the CSF was dripping, Frantz said.


The procedure took about an hour, and Ryan brought her coffee and food and made sure she was well rested before returning home. She said the study staff was there every step of the way to try and make her as comfortable as possible.


"My team was awesome," she said. "Everybody was just awesome and incredibly nice and walked me through everything."


Frantz did experience a light headache the following day, but said it got better with caffeine, sugar and rest.


Most participants who have undergone the spinal tap have echoed Frantz's sentiments about the procedure being less uncomfortable than they expected.


"The majority of spinal tap experiences have been very positive," Ryan said.


"It's not as bad as it sounds, and it's definitely worth doing," Frantz said.


Overall, Frantz said she was proud to have been the first person in the study and one of the first HD research participants to donate CSF, and is planning to do so again at her next visit.


"It's just nice to be able to make a difference and hopefully find a cure or a treatment," she said.