Editorial: Advances in neurorehabilitation strategies for children with rare neurological disorders

Abstract

Full text

Rare diseases [RDs] are usually multisystemic conditions affecting < 5 in 10,000 individuals in the general population. Despite the rarity of each single disorder, taken all together they affect over 300 million individuals worldwide, and more than 50% of these people are children with different phenotypes and onsets. Nearly 80% of these subjects have neurological manifestations causing life-long motor, intellectual and psychosocial disabilities of various types and severity. The main neurological RDs include nervous system malformations, disorders of neurodevelopment, epileptic encephalopathies, neurometabolic and neuromuscular diseases, mitochondrial and neurotransmitter disorders, movement disorders including ataxias and spastic paraplegias, immune-mediated neurological disorders, DNA defect repair syndromes, and neurocutaneous syndromes. Affected people with neurological RDs experience multiple accesses to different health services and multifaceted, often not conclusive treatments. Among a few conditions which can be currently cured, care is entrusted to forms of tailored management and symptomatic medications, coupled with programs of physical/neurocognitive rehabilitation. The time spent by these children in rehabilitation affects school attendance and performance, study time, playful hours, and leisure activities; this is aggravated in adolescents and adults, including parents, by the absence from employment and job productivity. Nevertheless, in many low/middle-income countries more than half of people with RDs do not receive the rehabilitation services they require. The need for continuity of special care encourages researchers to put in action new strategies, combining innovative approaches for motor and cognitive learning based on new approaches and emerging technologies.

The present Research Topic is part of this vibrant and dynamic context. It consists of 4 research studies coming from different research fields including bio-engineering, habilitation/rehabilitation, general medicine, pediatrics, psychology, and educational sciences, thus reflecting the innovative results and tools of multidisciplinary approaches, which are typical of complex systems and analyses including the use of modified constraint-induced movement therapy, instrument movement analysis, antispasmodic rehabilitation coupled with drug therapy and motor imagery.

Certainly, the great variability of different disorders and multiplicity of underlying pathogenic mechanisms involved and analyzed in the systematic review, in the case series and in the case reports included in this Research Topic, and more in general reported in the current literature, highlight the caveats and limits of research on neurorehabilitation strategies in rare neurological disorders, especially in children. International research collaborations, projects as well as Research Topics such those included in this Research Topic, can be thus helpful for highlighting and providing an in-depth understanding of the neurological manifestations of RDs and of the efficacy of (re)-habilitation interventions. while being able to stimulate the use of such insights in the clinical practice.

Author contributions

CV: Writing – original draft, Writing – review & editing. AP: Writing – original draft, Writing – review & editing. MR: Writing – original draft, Writing – review & editing. FR: Writing – review & editing. MI: Writing – original draft, Writing – review & editing.