Name: SKY-0515 in Huntington's disease: Care management intervention strategies
Published: 2026-09-16T18:00:43-04:00

EHDN multidisciplinary position paper: managed care network and case manager

“The multidisciplinary team should be composed of different professionals who work closely together and interact within the group. It is also important to establish an individualised care and treatment plan for every single case of a patient and family. A case manager or coordinator may facilitate the work of the multidisciplinary team.” (opens the source at this quote in a new tab)
“This position paper reveals that there are key essential professional groups involved in the MDT who do not have an HD guideline available, like psychologists, social workers, nurses, case managers and general practitioners.” (opens the source at this quote in a new tab)

HDSA physician's guide: team care and Centers of Excellence

“No one doctor or one caregiver should attempt to manage all aspects of an HD case without assistance.” (opens the source at this quote in a new tab)
“Because there are no treatments which can slow, halt, or reverse the course of the disease, the goals of treatment are to reduce the burden of symptoms, maximize function, and optimize quality of life.” (opens the source at this quote in a new tab)

HDSA Centers of Excellence: team composition

“Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.” (opens the source at this quote in a new tab)

Advance care planning: EHDN guideline

“Advanced care planning is essential and alternative feeding methods (PEG, see swallowing disorders) should be anticipated and discussed with relatives and patients still able to understand the benefits and risks of the intervention.” (opens the source at this quote in a new tab)

Advance care planning and psychosocial support: German Neurological Society guideline

“Early in the disease process, it is recommended to document living wills and care directives” (opens the source at this quote in a new tab)
“Moreover, there should be support from a social worker to navigate the complex bureaucracy to apply for and obtain financial assistance and support for care needs.” (opens the source at this quote in a new tab)

Advance care planning: multicenter HDQLIFE study

“Most importantly, engaging in ACP does not cause untoward effects on HRQoL or STB for this rare neurodegenerative disease where the lifetime prevalence of STB approaches 30%.” (opens the source at this quote in a new tab)

Palliative care in advanced disease: scoping review

“Our search resulted in 333 articles, 38 of which were included.” (opens the source at this quote in a new tab)
“Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III).” (opens the source at this quote in a new tab)

Palliative care across disease stages

“But for those with pain, anxiety, sleep disturbances, and difficulty coping with their diagnosis, referral to palliative care should be strongly considered.” (opens the source at this quote in a new tab)