Syringomyelia

Amyotrophic lateral sclerosis (ALS) is a severe and rapidly progressing nervous system disease with an average survival of two to three years after diagnosis. Patients experience significant physical and psychological challenges, and apart from the drug Riluzole, effective treatments are lacking. This study aims to understand how life-sustaining ventilation support, either non-invasive or with tracheostomy, impacts the quality of life of ALS patients, their partners, and children, addressing a difficult ethical issue in ALS care. Participants are divided into two groups: those who choose life-prolonging treatment with long-term mechanical ventilation support and those who decline such treatment. The study involves a longitudinal questionnaire approach conducted in Norway, measuring overall, health-related, and disease-specific quality of life over time. Assessments occur at inclusion and then every three months up to 21 months. Throughout the study, ALS patients, their partners, and children complete various quality of life questionnaires, including the Quality of Life Scale, EQ-5D-5L, ALS-specific scales, and caregiver burden surveys. Researchers monitor changes in these assessments to understand the effects of ventilation support. The study is sponsored by Haukeland University Hospital and includes participants aged 8 years and older, with data collection planned until 2032.

The investigators will recruit 20 patients with low cervical or thoracic ASIA C or D spinal cord injuries based on specific inclusion and exclusion criteria. The patients will be randomized into 2 groups. Each group will receive either the theta burst stimulation or the placebo stimulation. rTMS will be delivered using a figure-of-eight coil positioned on the patient's head, targeting the leg area of the primary motor cortex. After the motor threshold (MT) is determined patients will receive a unilateral 90% subthreshold theta burst stimulation for 3 minutes The protocol includes 15 stimulation sessions over a 3-week period. The 12-week follow up consist of a series of electrophysiological and functional tests to assess upper and lower limb function bilaterally. Secondary outcomes include pain using the NRS scale, and self-reported evaluation of autonomic functions before, during, and after the treatment.

Researchers are evaluating the use of Magnetic Resonance Spectroscopy (MRS) to assess spinal cord lesions in adults. The study aims to establish the feasibility and range of MRS for mapping the entire spine spectrum at short echo times. This will help compare results in patients to assess the malignant potential and grade of spinal cord lesions. The trial also plans to test the reproducibility of the MRS protocol and examine the effects of radiation on the spinal cord over time in patients receiving craniospinal irradiation for leptomeningeal disease (LMD). Participants include healthy adult volunteers and adult patients with low volume LMD undergoing craniospinal irradiation as part of their standard treatment. Both groups will receive MRS scans of the spine using the established protocol. The study is non-randomized and involves implementing the MRS technique on these two groups to gather data on its use and effects. The secondary objective is to provide data for future trials focused on functional status after radiation and tumor grading predictability using MRS. During the study, participants will undergo MRS spine scans and be monitored for safety and any adverse events throughout the study duration, averaging about one year. Researchers will assess the success and reproducibility of the MRS protocol and monitor the impact of radiation on the spinal cord at different times. Participants must consent and comply with study procedures, and safety will be closely followed until study completion.

Researchers are evaluating the safety and early effects of human umbilical cord-derived mesenchymal stromal cell-derived extracellular vesicles (hUC-MSC-sEV) delivered by intrathecal injection for people with syringomyelia. This open-label, single-arm phase I trial uses a dose-escalation design to find the best dose and assess potential risks. The study is sponsored by Xuanwu Hospital, Beijing, and aims to improve treatment options for this condition. Participants will receive one of three dose levels of hUC-MSC-sEV particles through a lumbar puncture once a month for three months. The doses range from low to high, with 2 ml administered each time. If no serious side effects are seen, the dose will increase in new participant groups. If dose-limiting toxicities occur, the study may adjust or stop dose escalation accordingly. During the study, participants will undergo neurological assessments, imaging, and safety checks at multiple intervals, including 4, 8, and 12 weeks, as well as at 12 months. Researchers will monitor for dose-limiting toxicities and evaluate functional scores related to spinal cord injury and syringomyelia progression. Participants are closely followed to observe any serious adverse events and overall treatment impact over one year.

Researchers are evaluating whether surgical release of the filum terminale, a fibrous tissue at the end of the spinal cord, provides better symptom relief than medical management in patients with Occult Tethered Cord Syndrome (OTCS). This phase II pilot randomized-controlled trial aims to assess the preliminary effectiveness and safety of surgery compared to medical treatment for this condition. Participants will be randomly assigned to either undergo surgical untethering of the filum terminale or receive only medical management. Symptom improvement and any adverse events will be monitored and recorded for one year after treatment begins. After at least one year, patients initially receiving medical management may switch to surgery if the principal investigator considers it beneficial. Throughout the study, participants will have their symptoms evaluated using the OCCULT Scale at the start and after one year. Additional assessments include urologic and fecal incontinence scores, medication changes, and intra-operative findings during surgery. Safety and symptom changes will be carefully tracked for one year to understand the treatment effects and risks involved.

Researchers are studying a surgical technique called fetoscopy to correct fetal myelomeningocele, a form of spina bifida, before birth. This pilot study compares two surgical approaches: a percutaneous method offered to patients with a posterior placenta, and a laparotomy with uterine exteriorization method available to all participants regardless of placental location. The goal is to see if these techniques can successfully close the myelomeningocele defect before delivery. Participants will receive fetoscopic repair of the myelomeningocele using one of the two surgical approaches based on their placental position and preference. Those with an anterior placenta will undergo the laparotomy method, while those with a posterior placenta may choose either the percutaneous or laparotomy approach. The study evaluates the success rate of these in-utero surgeries from the time of operation until delivery, lasting up to 21 weeks. During the study, participants will undergo MRI and ultrasound to confirm lesion and hindbrain herniation levels. Social work and pediatric neurology consultations will assess eligibility and support. Participants must remain near the medical center for pregnancy and delivery and return for follow-up visits at 12, 24, 30, 48, and 60 months after birth. The study tracks surgical outcomes and monitors safety and development over time.

Researchers are evaluating a combination of spinal interstitial laser ablation and stereotactic spine radiosurgery (SSRS) to treat spinal tumors near the spinal cord, especially in patients with spinal metastasis that includes an epidural component. The study aims to improve tumor control, pain relief, preserve function, and enhance quality of life while documenting safety and accuracy of MRI-compatible hardware used for image guidance. This research measures how effective these combined treatments are compared to historical controls using SSRS alone. Participants will receive laser interstitial thermal ablation and CT-guided stereotactic radiosurgery, delivered via intensity-modulated radiation therapy, on separate days within a one to fourteen day window. The order of treatments is decided by the treating physician. Surgery occurs in an intraoperative suite equipped with an operating room and MRI scanner to guide the laser ablation precisely. During the study, participants will have regular assessments including MRI scans to monitor tumor control and epidural tumor regression at multiple time points up to 24 months. Researchers will also evaluate overall survival, muscle strength, pain levels, sensory and neurological function, ability to walk, and quality of life using validated tools. Adverse events will be tracked and correlated with imaging and symptom changes. The study involves ongoing follow-up visits for up to two years after treatment to measure outcomes and safety.

This research aims to evaluate a combined rehabilitation approach using testosterone replacement therapy (TRT) with locomotor training (LT) in men who have testosterone deficiency and walking difficulties after incomplete or complete spinal cord injury (SCI). The study explores whether this combination can improve muscle size, bone mineral density, muscle function, and walking recovery in this group. It is a Phase 2 pilot study focused on men with low testosterone and ambulatory dysfunction following SCI. Participants will be divided into three groups: one receiving weekly testosterone enanthate injections (100 mg), another receiving the same testosterone injections plus locomotor training involving treadmill and overground walking sessions four times per week for 2-3 months, and a non-treatment control group receiving no intervention. TRT will be administered for six months, with locomotor training occurring during the first 2-3 months alongside TRT in the combination group. During the study, participants will undergo assessments at baseline and at 1, 3, and 6 months, including MRI scans, DEXA scans to measure bone density, muscle performance tests, and walking ability evaluations such as the 6-minute walk test and 10-meter walk test. Safety evaluations will include physical exams, ECG, prostate exams, and blood tests monitoring hematocrit, liver enzymes, prostate-specific antigen, and other health markers. The study will compare outcomes among the three groups over six months to assess changes in muscle size, bone density, muscle strength, and walking function.

This research aims to improve manual wheelchair use for people with spinal cord diseases or injuries by studying a new ergonomic wheelchair design. Many manual wheelchair users experience shoulder pain from overuse, which can reduce their independence. The study focuses on a wheelchair that positions the hand rims better and offers different gearing options to ease propulsion and potentially reduce shoulder strain. The study has two parts. First, participants will use a single-speed ergonomic wheelchair to test three different gear ratios: low (3:2), normal (1:1), and high (2:3). Next, participants will try a newly developed multi-speed ergonomic wheelchair featuring two hand rims per side, allowing users to shift gears simply by choosing which rim to push. These tests will help evaluate propulsion efficiency on various terrains and situations. Participants will complete several tests measuring wheelchair propulsion efficiency, energy use, and mobility performance, including 20 Meter Push Tests on different surfaces, 6 Minute Push Tests, and mobility-related activities. Feedback from users will guide wheelchair design improvements. The study involves up to four weeks of participation, with various assessments to measure work done, energy expenditure, and user experience with the wheelchairs.

Researchers are evaluating outcomes and their predictors in various neurosurgical conditions to improve the quality and consistency of research and clinical care. The study focuses on standardizing the assessment of clinical, cognitive, and psychological status before and after neurosurgical interventions across multiple centers. This effort aims to create a common language in routine practice and support better therapeutic decisions through shared data and identified predictive factors. The study collects detailed clinical and demographic information from patients undergoing neurosurgery for a wide range of conditions, including tumors, vascular diseases, trauma, spinal disorders, functional pathologies, peripheral nerve issues, and malformations. Data such as comorbidities, anesthesia details, complications, and psychological assessments are gathered before surgery and at follow-ups, with timing varying by condition. An artificial intelligence analysis will be used to identify important predictors and outcomes. Participants will provide data over a period of up to five years, including sociodemographic details, clinical status, cognitive and psychological assessments, and complication records. The study monitors these factors preoperatively and postoperatively to describe outcomes and explore associations with preoperative indicators. The long-term collection of data supports understanding neurosurgical results and guiding patient care more precisely.