The following article is part of coverage from the American Academy of Neurology’s Annual Meeting (AAN 2020). Due to the global COVID-19 pandemic, the Academy made the necessary decision to cancel the meeting originally scheduled for April 25–May 1, 2020, in Toronto. While live events will not proceed as planned, readers can click here catch up on the latest research intended to be presented at the meeting.

Intrathecally administered disease-modifying therapies (DMTs) are an up-and-coming promising treatment approach for Huntington disease (HD), but many HD specialist clinics do not have the resources available to administer DMTs appropriately with an intrathecal strategy, according to research intended to be presented at the annual meeting of the American Academy of Neurology (AAN 2020).

The study examined the capacity of 35 HD specialist centers in 9 countries to perform intrathecally administered treatments in patients with HD. Investigators conducted interviews with >170 healthcare professionals to assess centers’ resource availability, utilization, skills, and equipment. Resources in each HD center were compared with an estimated number of resources required for future patients with HD who would be eligible for intrathecally administered DMTs. These comparisons were made to identify capacity gaps in current care.

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According to findings from the interviews, approximately 20% of HD teams reported they had the necessary resources currently available to provide intrathecal injections. These resources consisted of a skilled “proceduralist” who was either a trained neurologist, anesthesiologist, or interventional radiologist, ≥1 nurse to assist in the injection, and the appropriate physical space to perform the procedure.

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Only 17% of HD specialist clinics were estimated to have a sufficient capacity to intrathecally administer DMTs to the eligible patient population, when the investigators considered all resources currently available in the hospital. Further, only 6% of HD clinics were estimated to have sufficient capacity when the researchers stimulated the additional referral-in of patients from non-HD-specialized centers.

The investigators of the study suggest that many “healthcare systems will need to plan adequately and ensure providers have sufficient training and resources to be able to deliver new DMTs,” and most clinics will need to prepare for “an increased demand for diagnosis, treatment, and follow-up.”


Pedrazzoli M, Ponomareva M, Moro M, et al. The organizational impact of upcoming treatments in Huntington’s disease: Resource capacity gaps and access to care implications. Intended to be presented at the 2020 annual meeting of the American Academy of Neurology.

Visit Neurology Advisor‘s conference section for complete AAN 2020 coverage.