Cohort profile: the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) cohort study.

BACKGROUND Cerebral Palsy (CP) is a group of permanent disorders of movement and posture that follow injuries to the developing brain. It results in motor dysfunction and a wide variety of comorbidities like epilepsy; pain; speech, hearing and vision disorders; cognitive dysfunction; and eating and digestive difficulties. Central data collection is essential to the study of the epidemiology, clinical presentations, care, and quality of life of patients affected by CP. CP specialists founded the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) in 2017. This paper describes the design, structure, aims and achievements of Swiss-CP-Reg and presents its first results. METHODS Swiss-CP-Reg records patients of any age diagnosed with CP who are born, are treated, or live in Switzerland. It collects data from medical records and reports, from questionnaires answered by patients and their families, and from data linkage with routine statistics and other registries. The registry contains information on diagnosis, clinical presentation, comorbidities, therapies, personal information, family history, and quality of life. RESULTS From August 2017 to August 2021, 546 participants (55% male, mean age at registration 8 years [interquartile range IQR: 5-12]), were enrolled in Swiss-CP-Reg. Most had been born at term (56%), were less than two years old at diagnosis (73%, median 18 months, IQR: 9-25), and were diagnosed with spastic CP (76%). Most (59%) live with a mild motor impairment (Gross Motor Function Classification System [GMFCS] level I or II), 12% with a moderate motor impairment (GMFCS level III), and 29% with a severe motor impairment (GMFCS level IV or V). In a subset of 170 participants, we measured intelligence quotient (IQ) and saw lower IQs with increasing GMFCS level. Swiss-CP-Reg has a strong interest in research, with four nested projects running currently, and many more planned. CONCLUSIONS Swiss-CP-Reg collects and exchanges national data on people living with CP to answer clinically relevant questions. Its structure enables retrospective and prospective data collection and knowledge exchange between experts to optimise and standardise treatment and to improve the health and quality of life of those diagnosed with CP in Switzerland

Experience with botulinum toxin type A in the treatment of neurogenic detrusor overactivity in clinical practice

Control of the lower urinary tract is a complex, multilevel process that involves both the peripheral and central nervous system. Neurogenic lower urinary tract dysfunction (LUTD) is a widespread chronic illness that impairs millions of people worldwide. Neurogenic LUTD has a major impact on quality of life, affecting emotional, social, sexual, occupational and physical aspects of daily life, and in addition to the debilitating manifestations for patients, it also imposes a substantial economic burden on every healthcare system. First-line treatment for neurogenic LUTD includes antimuscarinics and some form of catheterization, preferably intermittent self-catheterization. However, the treatment effect is often unsatisfactory, so that other options have to be considered. Moreover, neurogenic LUTD is a challenge because all available treatment modalities (i.e. conservative, minimally invasive and invasive therapies) may fail. In recent years, botulinum neurotoxin type A (BoNT/A) treatment has been shown to be an effective pharmacological therapy option in patients refractory to antimuscarinic and neurogenic detrusor overactivity (NDO). Several studies have shown that BoNT/A injection significantly reduces detrusor muscle overactivity. Also BoNT/A treatment of NDO has revealed a significant improvement of lower urinary tract function with regard to reduced urinary incontinence, reduced detrusor pressure, increased bladder capacity and improved quality of life in NDO

Digital imaging data on CD-R : a time trap for orthopaedic surgeons in outpatient clinics

PURPOSE: X-rays are presented on CD-Rs in a digital format with increasing frequency. This technique is potentially more time-consuming for the clinician compared to conventional pictures. METHODS: Ten sets of six X-rays for each case were prepared in both the conventional way and in digital format on CD-R. The order was randomised. Time in seconds was measured for six experienced orthopaedic residents to present the most recent a.p. view out of a given set. As a precondition, the computer was turned on and the same viewing software was used for all digital sets. The results were compared using a non-linked Student's t-test (significance level P = 0.05). RESULTS: The presentation of conventional X-rays required 21 s (+/-7.5 s) and of digital X-rays 90 s (+/-27 s), respectively (P > 0.001). CONCLUSION: In spite of ideal conditions, digital X-rays on CD-R need significantly more time in the orthopaedic clinic. In major centres, patients present with different software and software in other languages, which increase the required time even further. This latter problem will be assessed in another study. This increase of preparation time required by a highly qualified staff member has implications on the economics and logistics and has a negative impact on daily clinical practice. One of the solutions might be that the CD-Rs be given to the registration desk and the data being already prepared when the patient sees the doctor. This can also include it being implemented in the digital system used in the inpatient part of the hospital and, therefore, making any other consultations or second opinions easily accessible

Cohort profile: the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) cohort study

BACKGROUND: Cerebral Palsy (CP) is a group of permanent disorders of movement and posture that follow injuries to the developing brain. It results in motor dysfunction and a wide variety of comorbidities like epilepsy; pain; speech, hearing and vision disorders; cognitive dysfunction; and eating and digestive difficulties. Central data collection is essential to the study of the epidemiology, clinical presentations, care, and quality of life of patients affected by CP. CP specialists founded the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) in 2017. This paper describes the design, structure, aims and achievements of Swiss-CP-Reg and presents its first results. METHODS: Swiss-CP-Reg records patients of any age diagnosed with CP who are born, are treated, or live in Switzerland. It collects data from medical records and reports, from questionnaires answered by patients and their families, and from data linkage with routine statistics and other registries. The registry contains information on diagnosis, clinical presentation, comorbidities, therapies, personal information, family history, and quality of life. RESULTS: From August 2017 to August 2021, 546 participants (55% male, mean age at registration 8 years [interquartile range IQR: 5–12]), were enrolled in Swiss-CP-Reg. Most had been born at term (56%), were less than two years old at diagnosis (73%, median 18 months, IQR: 9–25), and were diagnosed with spastic CP (76%). Most (59%) live with a mild motor impairment (Gross Motor Function Classification System [GMFCS] level I or II), 12% with a moderate motor impairment (GMFCS level III), and 29% with a severe motor impairment (GMFCS level IV or V). In a subset of 170 participants, we measured intelligence quotient (IQ) and saw lower IQs with increasing GMFCS level. Swiss-CP-Reg has a strong interest in research, with four nested projects running currently, and many more planned. CONCLUSIONS: Swiss-CP-Reg collects and exchanges national data on people living with CP to answer clinically relevant questions. Its structure enables retrospective and prospective data collection and knowledge exchange between experts to optimise and standardise treatment and to improve the health and quality of life of those diagnosed with CP in Switzerland. ClinicalTrials.gov identifier: NCT0499287

Erratum to: Guidelines for the use and interpretation of assays for monitoring autophagy (3rd edition) (Autophagy, 12, 1, 1-222, 10.1080/15548627.2015.1100356

non present