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Archive for category: E-News

E-News

2016 Durban Congress highlights patient-centred care and safety

, 26 August 2020/in E-News /by 3wmedia

‘Addressing the challenge of patient-centred care and safety’ was the theme addressed in the International Hospital Federation (IHF) 40th World Hospital Congress held in Durban, South Africa, 31 October to 3 November 2016, attended by national and international healthcare leaders and organizations from 50 countries.

Discussions on the challenges being encountered by different countries when it comes to making patients the centre of quality and affordable healthcare services and management, as well as the solutions on how to improve hospitals’ delivery of quality care and the healthcare status of each country were tackled.
Quality of Care, Capacity Building in Leadership and Management, Governance and Accountability, Ethics and Medical Legal Issues, Financing and Universal Health Coverage, Health Technology, and Service Delivery were some of the tracks explored during the Congress.
Dr. Aaron Motsoaledi, the Honourable Minister of Health of the host country, Republic of South Africa, mentioned in his welcome message the two objectives of the South African National Development Plan that are needed to be comprehended not only by African healthcare leaders and personnel, but by all healthcare leaders internationally: ‘(1) The quality of services in the public health system must be improved (2) The relative cost of private healthcare must be reduced.’
These two important points were emphasized and tackled in detail in the three-day congress through member, free paper and special sessions as well as the pre-congress meetings, which included the African Regional meeting, hosted by the National Department of Health of South Africa.
Erik Normann, IHF President, in his opening remarks, expressed his delight at the fact that the Durban Congress was the first to be hosted by IHF on the African continent since the creation of the IHF in 1929.
Apart from addressing the challenges and delivering interesting and trending healthcare topics, the congress has also made sure that all the events and activities held would make a difference in patient-centred care by featuring cutting-edge delivery approaches and inventive management practices.
Aligned with those innovative healthcare management practices, IHF members and delegates had unique opportunities to exhibit and share their accomplishments and practices in hospital leadership to the global healthcare community through expositions.
The IHF CEO Circle, the exclusive professional network for senior healthcare executives was also highlighted in the congress through meetings.

IHF 2016 International Awards
The IHF 2016 International Awards attracted many excellence entries from 19 countries. The Awards, given to hospitals, not individuals, because healthcare is acknowledged as a team endeavour, recognize achievements in several areas, such as quality and patient safety, corporate social responsibility, innovations in service delivery at affordable costs, and healthcare leadership and management practices.

In the last day of the event, the delegates were also given the chance to visit and tour some of the distinguished hospitals and healthcare facilities in Durban, South Africa which included: KZN Children’s Hospital, Ethekwini Hospital and Heart Centre, Inkosi Albert Luthuli Central Hospital, King Dinuzulu Hospital, and Prince Mshiyeni Memorial Hospital.
All the mentioned activities and events of this year’s World Hospital Congress show its key unique features on how it can contribute and respond to the needs in the global healthcare nowadays.
Delegates were already looking forward to attending next year’s congress, the IHF 41st World Hospital Congress, which will take place 7-9 November 2017 in Taipei, Taiwan, with the theme ‘Patient-friendly and Smarter Healthcare’.
The IHF World Hospital Congress, being held annually, is a unique global forum’ and a one-stop shop’ for the healthcare professionals in quest of an unparalleled environment to exchange insights, experiences, and expertise in the sector of health management and service delivery.
IHF having as a mission to enhance knowledge that can translate into practice for those having the responsibilities to lead healthcare organizations is making available all the resources that were shared during this congress.
A selection of Congress presentations appears on pages 15-17 of this issue of International Hospital.

www.ihf-fih.org
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Researchers map prostate cancer relapse using C-11 choline PET and MRI

, 26 August 2020/in E-News /by 3wmedia

A team of Mayo Clinic researchers has, for the first time, successfully mapped patterns of prostate cancer recurrence, following surgery. Using C-11 choline PET imaging and multi-parametric MRI, researchers found an anatomically diverse pattern of recurrence, which may help optimize treatment of patients whose prostate cancer returns after surgery.
‘This study has important implications for men who have a rising prostate-specific antigen (PSA) test, also known as biochemical recurrence, after radical prostatectomy for prostate cancer,’ says Jeffrey Karnes, M.D., a urological surgeon at Mayo Clinic. ‘In men with biochemical recurrence, determining where the disease has recurred is quite challenging, especially when the PSA level is low.’
According to Dr. Karnes, in the U.S., approximately 30 percent of patients who have had an initial prostate cancer surgically excised will suffer a recurrence and seek treatment. ‘Current imaging tests like conventional bone and CT scans are not sensitive enough to identify sites of recurrence, especially when the PSA value is lower than 10,’ he says.
Dr. Karnes says the combination of C-11 choline PET scanning and multiparametric MRI, helps physicians accurately identify sites of recurrence at an average PSA of 2. More importantly, he says, ‘This type of staging allows us to identify sites of recurrent disease that can be potentially treated either surgically or with radiation.’
Dr. Karnes and his team also were able to describe patterns of prostate cancer recurrence. They found that nearly two-thirds of men in the study had recurrence limited to the pelvis, which potentially can be targeted for radiation therapy.

Mayo Clinic http://tinyurl.com/h9ot93x

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Imaging technique measures tumour stiffness to aid surgical planning

, 26 August 2020/in E-News /by 3wmedia

Important steps in planning tumour surgery include identifying borders between tumour and healthy tissue and assessing the tumour stiffness, e.g. hard and calcified or soft and pliant. For decades, tumours near the surface of the body have been evaluated for stiffness by simple palpation-the physician pressing on the tissue. Because tumours within the skull cannot be palpated, researchers used Magnetic Resonance Elastography (MRE) to assess pituitary tumour stiffness by measuring waves transmitted through the skull into pituitary macroadenomas (PMAs). MRE reliably identified tumours that were soft enough for removal with a minimally-invasive suction technique versus harder tumours requiring more invasive surgery.
‘The group developed brain MRE several years ago and is now successfully applying it to clinical diagnosis and treatment,’ explained Guoying Liu, Ph.D., Director of the NIBIB Program in Magnetic Resonance Imaging. ‘This development of a new imaging technique followed by its practical application in surgical planning for better patient outcomes is an outstanding example of one of the main objectives of NIBIB-funded research.’
MRE is a special magnetic resonance imaging technique that captures snapshots of shear waves that move through the tissue and create elastograms-images that show tissue stiffness. John Huston III, M.D., Professor of Radiology at the Mayo Clinic in Rochester, MN, and senior author of the study, explains how MRE works. ‘MRE is similar to a drop of water hitting a still pond to create the ripples that move out in all directions. We generate tiny, harmless ripples, or shear waves, that travel through the brain of the patient. Our instruments measure how the ripples change as they move through the brain and those changes give us an extremely accurate measure–and a coloUr-coded picture–of the stiffness of the tissue.’
Ninety percent of PMAs are soft-nearly the consistency of toothpaste. Therefore, without MRE, surgeons would routinely plan for a procedure called transphenoidal resection that employs very thin instruments that are threaded through the nasal cavity to the pituitary gland at the base of the skull, where suction is used to remove the tumour. However, in about 10percent of the cases, the surgeon will encounter a hard tumour. At that point an attempt is made to break-up the tumour-essentially chipping away at it with sharp instruments. If that is not successful, the surgeon must perform a fully-invasive craniotomy that involves removing a piece of the skull bone in order to fully expose the tumour.
The more extensive procedure means added risk and discomfort for patients, and up to a week-long recovery in the hospital compared to the transphenoidal approach that allows patients to leave the hospital in a day or two. Using MRE, hard PMAs can be identified and the more extensive craniotomy can be planned before starting the surgery, which makes the more invasive procedure less taxing for both the surgeon and patient. Similarly, MRE showing a soft PMA gives surgeons confidence that the nasal entry and removal by suction will be successful-eliminating the likelihood that the surgeon may need to perform a second fully-invasive craniotomy.

NIBIB http://tinyurl.com/gu285fb

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Machine-learning algorithms in echocardiographic interpretation and diagnosis of HCM

, 26 August 2020/in E-News /by 3wmedia

Computer algorithms can automatically interpret echocardiographic images and distinguish between pathological hypertrophic cardiomyopathy (HCM) and physiological changes in athletes’ hearts, according to research from the Icahn School of Medicine at Mount Sinai (ISMMS).

HCM is a disease in which a portion of the myocardium enlarges, creating functional impairment of the heart. It is the leading cause of sudden death in young athletes. Diagnosing HCM is challenging since athletes can present with physiological hypertrophy, in which their hearts appear large, but do not feature the pathological abnormality of HCM. The current standard of care requires precise phenotyping of the two similar conditions by a highly trained cardiologist.

‘Our research has demonstrated for the first time that machine-learning algorithms can assist in the discrimination of physiological versus pathological hypertrophic remodeling, thus enabling easier and more accurate diagnoses of HCM,’ said senior study author Partho P. Sengupta, MD, Director of Cardiac Ultrasound Research and Professor of Medicine in Cardiology at the Icahn School of Medicine at Mount Sinai. ‘This is a major milestone for echocardiography, and represents a critical step toward the development of a real-time, machine-learning-based system for automated interpretation of echocardiographic images. This could help novice echo readers with limited experience, making the diagnosis rapid and more widely available.’

Using data from an existing cohort of 139 male subjects who underwent echocardiographic imaging at ISMMS (77 verified athlete cases and 62 verified HCM cases), the researchers analyzed the images with tissue tracking software and identified variable sets to incorporate in the machine-learning models. They then developed a collective machine-learning model with three different algorithms to differentiate the two conditions. The model demonstrated superior diagnostic ability comparable to conventional 2D echocardiographic and Doppler-derived parameters used in clinical practice.

‘Our approach shows a promising trend in using automated algorithms as precision medicine techniques to augment physician-guided diagnosis,’ said study author Joel Dudley, PhD, Director of the Institute for Next Generation Healthcare and Director of the Center for Biomedical Informatics at ISMMS. ‘This demonstrates how machine-learning models and other smart interpretation systems could help to efficiently analyse and process large volumes of cardiac ultrasound data, and with the growth of telemedicine, it could enable cardiac diagnoses even in the most resource-burdened areas.’

Mount Sinai Health System www.mountsinai.org/about-us/newsroom/press-releases/mount-sinai-researchers-demonstrate-ability-of-machine-learning-algorithms-in-echocardiographic-interpretation-and-diagnosis-of-hcm

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Antibody breaks Leukaemia’s hold, new therapeutic approach

, 26 August 2020/in E-News /by 3wmedia

Acute myeloid leukaemia (AML) is an aggressive cancer known for drug resistance and relapse. In an effort to uncover new treatment strategies, researchers at University of California San Diego School of Medicine and Moores Cancer Center discovered that a cell surface molecule known as CD98 promotes AML. The study also shows that inhibiting CD98 with the therapeutic antibody IGN523 blocks AML growth in patient-derived cells and mouse models.
‘To improve therapeutic strategies for this disease, we need to look not just at the cancer cells themselves, but also at their interactions with surrounding cells, tissues, molecules and blood vessels in the body,’ said co-senior author Tannishtha Reya, PhD, professor of pharmacology at UC San Diego School of Medicine and Moores Cancer Center. ‘In this study, we identified CD98 as a critical molecule driving AML growth. We showed that blocking CD98 can effectively reduce leukaemia burden and improve survival by preventing cancer cells from receiving support from the surrounding environment.’

Reya led the study together with Mark Ginsberg, MD, professor of medicine at UC San Diego School of Medicine and Moores Cancer Center. Co-author Edward van der Horst, PhD, senior director at Igenica Biotherapeutics Inc., provided the anti-CD98 antibody IGN523.
AML is a type of cancer in which the bone marrow makes abnormal white blood cells, red blood cells or platelets. Reya’s team and others have previously shown that leukaemia cells interact with their surroundings in the body via molecules on their cell surfaces, and that these interactions can help the cancer cells divide, replicate and metastasize.

CD98 is a molecule found on the surface of cells, where it controls how cells stick to one another. CD98 is known to play a role in the proliferation and activation of certain immune cells. CD98 levels are also known to be elevated in some solid tumours, and linked to poor prognosis.

To determine CD98’s role in AML, in this latest study Reya’s team engineered mouse models that lack the molecule. They found that the loss of CD98 blocked AML growth and improved survival. CD98 loss largely spared normal blood cells, which the researchers said indicates a potential therapeutic window. Further experiments revealed that leukaemia cells lacking CD98 had fewer stable interactions with the lining of blood vessels – interactions that were needed to fuel AML growth.

Next, the researchers wanted to see what would happen if they blocked CD98 in AML with a deliverable inhibitor. In 2015, Igenica Biotherapeutics Inc. tested IGN523, a humanized antibody that specifically binds and inhibits CD98, in a phase 1 clinical trial at Moores Cancer Center and elsewhere. The trial’s goal was to determine a safe dose for IGN523 administration in AML patients. In this study, Reya and team tested IGN523 in their own AML models.

The researchers found that IGN523 blocks CD98’s AML-promoting activity in both mouse models of AML and human cells in the laboratory. They also transplanted human patient-derived AML cells into mice and treated the recipients soon after with either IGN523, the anti-CD98 antibody, or with a control antibody. Anti-CD98-treatment effectively eliminated AML cells. In contrast, AML in control mice expanded more than 100-fold.

‘This study suggests that human AML can’t get established without CD98, and that blocking the molecule with anti-CD98 antibodies could be beneficial for the treatment of AML in both adults and children,’ Reya said.

Moving forward, Reya and team are working to further define whether CD98 could be targeted to treat paediatric AML.

UC San Diego Health health.ucsd.edu/news/releases/Pages/2016-10-27-antibody-breaks-leukaemias-hold-new-therapeutic-approach.aspx

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Study identies aortic valve gradient as key to TAVR outcomes

, 26 August 2020/in E-News /by 3wmedia

Patients with a combination of left ventricular dysfunction and low aortic valve gradient, or reduced force of blood flow through the aortic valve, have higher mortality rates and a greater risk of recurrent heart failure after transcatheter aortic valve replacement (TAVR), with low aortic valve gradient the driving force behind their poor outcomes.
Patients with this profile, however, should still be considered for TAVR, especially since research on similar patients who had surgical valve replacement found that they could withstand the procedure, Suzanne J. Baron, M.D., M.Sc., the study’s lead author, said.
Low aortic valve gradient is a result of aortic stenosis, a narrowing of the opening of the aortic valve. This condition results in restricted blood flow from the left ventricle to the aorta. Stenosis can also lead to impaired left ventricular ejection fraction, meaning that the heart pumps an inadequate amount of blood with each beat.
To treat aortic stenosis, physicians typically replace the aortic valve, either through open heart surgery or through TAVR. During TAVR, a new valve is delivered to the heart through arteries in the leg or chest. For patients at high risk of surgical complications, TAVR has been shown to be at least as effective as open heart surgery.
Previous studies of valve replacement through surgery have shown that patients with impaired left ventricular ejection fraction and low aortic valve gradient do not do as well as those with better cardiac function and blood flow. In this study, researchers set out to determine the roles that left ventricular dysfunction and low aortic valve gradient play in rates of death and recurrent heart failure following this less invasive procedure.
Since left ventricular dysfunction and low aortic valve gradient are oft en seen together, researchers aimed to determine which of these factors was the driving force behind the poor clinical outcomes. Aft er adjusting for several clinical factors, including age, sex, previous cardiovascular bypass grafting, and previous angioplasty, only the presence of a low aortic valve gradient was associated with higher mortality rates and recurrent heart failure. The effect of left ventricular ejection fraction was no longer significant.
Baron, a cardiologist at Saint Luke’s Mid America Heart Institute, University of Missouri-Kansas City, in Kansas City, Missouri, said the finding that left ventricular dysfunction was not independently associated with long-term mortality after adjusting for clinical factors "provides important reassurance regarding the benefits of TAVR, even in patients with severe left ventricular dysfunction." The study results also suggest that patients with a low aortic valve gradient may be a subset of aortic stenosis patients who have less long-term benefit from this procedure, although the majority of these patients who were still alive one year after the procedure had improved quality of life. Baron concludes that "neither severe left ventricular dysfunction nor low aortic valve gradient alone or in combination provide sufficient prognostic discrimination to preclude treatment with TAVR in the absence of other adverse prognostic factors."

The American College of Cardiology http://tinyurl.com/zw28rc4

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Immunotherapy reduces cardiovascular risk in rheumatoid arthritis

, 26 August 2020/in E-News /by 3wmedia

Extra-low dose combinat ion of two anticytokines reduces disease activity and cardiovascular events Immunotherapy reduces cardiovascular risk in patients with rheumatoid arthritis, according to research presented by Professor Aida Babaeva, head of the Department of Internal Medicine, Volgograd State Medical University, Volgograd, Russia. The combination of two extralow dose anticytokine drugs reduced rheumatoid arthritis disease activity and cardiovascular events.
‘Rheumatoid arthritis is an autoimmune disease in which cytokines such as tumour necrosis factor (TNF) and interferon (IFN), which normally protect the
body, attack healthy cells,’ said Professor Babaeva. ‘Patients have painful and inflamed joints. They are also at increased cardiovascular risk, particularly if their rheumatoid arthritis is not controlled.’
Professor Babaeva’s previous research showed that treatment with anticytokine drugs can decrease the activity of rheumatoid arthritis. Extra-low dose anti-TNFα reduced levels of inflammatory mediators and cytokines including C-reactive protein (CRP), rheumatoid factor, TNF, interleukin-1 (IL-1), and interleukin-6 (IL-6). The effect was more apparent and developed earlier when patients were treated with a combination of anti-TNFα and anti-IFNγ both at extra-low doses.
The current study investigated the impact of the combination of drugs on cardiovascular events. It included 68 patients who had suffered from active rheumatoid arthritis for at least five years. Patients were randomized to receive the combination of anti-TNFα and anti-IFNγ plus standard disease-modifying therapy (38 patients) or placebo plus standard therapy (30 patients). During the three year follow up period the investigators monitored rheumatoid arthritis disease activity and cardiovascular events.
Patients taking the combination of anticytokines had a lower rheumatoid arthritis disease activity score, as measured by the DAS28,2 and more dramatic decreases in IL-1, IL-6 and TNFα than the group on standard therapy alone.
The incidence of cardiovascular events (unstable angina, severe hypertensive crisis, and deterioration of chronic heart failure) was more than double in the group on conventional disease-modifying drugs alone (37percent) compared to those also taking the combination of anticytokines (13percent).
Professor Babaeva said: ‘Our findings suggest that the decreased  rheumatoid arthritis disease activity with the combination of anticytokines translates into decreased cardiovascular risk. Rheumatoid arthritis promotes the development of cardiovascular disease in a number of ways. Therefore, decreasing disease activity may also reduce cardiovascular risk by slowing down or halting these processes.’
For example, rheumatoid arthritis is associated with dysfunction of the blood  vessel lining (called endothelium), which leads to lipid accumulation in the artery wall, plaque formation and atherosclerosis. Increased disease activity is also linked with a pro-coagulant state in which patients are more prone to blood clots and thrombosis. Patients with active disease have an increase in molecules that promote inflammation, which has been associated with an increased risk of cardiovascular disease.
In patients with hypertension, target blood pressure was reached in 71percent of those taking the combination of anticytokines compared to just 32percent of patients on standard therapy alone.
Professor Babaeva said: ‘This doesn’t mean that the two drugs directly impact on blood pressure. But the combination can improve endothelial function and it could be that blood pressure is more stable when disease activity is low.’
‘We found that the combination of two anticytokines containing extra-low doses of antibodies against TNFα and IFNγ can improve the efficacy of standard rheumatoid arthritis therapy and decrease cardiovascular risk,’ said Professor Babaeva.

European Society of Cardiology http://tinyurl.com/gny3vyg

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MEDICAL FAIR THAILAND 2017 to emphasize connected healthcare and geriatric rehabilitative care

, 26 August 2020/in E-News /by 3wmedia

The 8th edition of MEDICAL FAIR THAILAND, the leading medical and healthcare
event in Thailand and the region, will take place at the Queen Sirikit National Convention Centre (QSNCC) in Bangkok, Thailand from 6-8 September 2017.

Since its inception in 2003, MEDICAL FAIR THAILAND has grown in size, stature and is recognized as Thailand’s most important resource and business platform for both international and regional suppliers from the medical and healthcare sectors.

In 2015, MEDICAL FAIR THAILAND held its largest edition to date as it welcomed
600 exhibitors from 42 countries including 15 national pavilions and country groups and attracted 7,226 quality trade buyers and decision makers from mainly Thailand and the ASEAN region.

The event focuses on equipment and supplies for the hospital, diagnostic, pharmaceutical, medical and rehabilitation sectors and brings together new and
innovative technologies, solutions, products and services from around the world.

In its upcoming 2017 edition, MEDICAL FAIR THAILAND will put the emphasis
on connected healthcare and geriatric rehabilitative care across two dedicated
platforms and numerous concurrently held events. For one, the Connected
Healthcare platform aims to demonstrate innovative digital solutions such
as wearables that are transforming the understanding of patient’s health statuses, improve care and deliver greater results. At the same time, and returning for its 3rd edition, the Advanced Rehab Technology Conference (ARTeC) will focus on innovative and effective technological solutions to decrease mobilityrelated disabilities. Co-organized by the Thai Rehabilitation Medicine Association, the Royal College of Physiatrists of Thailand and Messe Dusseldorf Asia, the academic conference will welcome international key thought leaders to share insights on robotic transfer systems, robotic arm training devices, robotic gait training and wearable devices.

Serving as a converging point for healthcare providers, medical suppliers, industry professionals, government bodies, hospital administrators, doctors, nurses and other healthcare professionals sourcing for the latest innovations in medical and healthcare, MEDICAL FAIR THAILAND 2017 is expected to draw 700 exhibitors, 17 national pavilions and country groups and 8,500 quality trade visitors.

mda.messe-dusseldorf.com

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Cycling in bed is safe for ICU patients

, 26 August 2020/in E-News /by 3wmedia

Early bicycle exercise during their stay in a hospital intensive care unit (ICU) may help some patients recover more quickly.
Researchers at McMaster University and St. Joseph’s Healthcare Hamilton have demonstrated that physiotherapists can safely start in-bed cycling sessions with critically ill, mechanically ventilated patients early on in their ICU stay.
‘People may think that ICU patients are too sick for physical activity, but we know that if patients start in-bed cycling two weeks into their ICU stay, they will walk farther at hospital discharge,’ says the study’s lead author Michelle Kho, an assistant professor with the School of Rehabilitation Science at McMaster University and physiotherapist at St. Joseph’s Healthcare Hamilton.
‘Our TryCYCLE study builds on this previous work and finds it is safe and feasible to systematically start in-bed cycling within the first four days of mechanical ventilation and continue throughout a patient’s ICU stay.’
Patients who survive their ICU stay are at high risk for muscle weakness and disability, and muscle atrophy and weakness starts within days of a patient’s admission to the ICU. Cycling targets the legs, especially the hip flexors, which are most vulnerable to these effects during bed rest.
By strengthening their muscles and overall health, patients may go home sooner, stronger and happier. This not only benefits the patient, but could alleviate the high cost of critical care for the healthcare system. TryCYCLE is the first of a series of studies that will determine the effects of early in-bed cycling with critically ill patients.
Over a year, Kho and her team conducted a study of 33 patients in the ICU at St. Joseph’s Healthcare Hamilton. The special in-bed cycling equipment was provided by the St. Joseph’s Healthcare Foundation.
Patients were 18 years of age or older, receiving mechanical ventilation, and walking independently prior to admission to the ICU. The treatment in the ICU was 30 minutes of supine cycling using a motorized stationary bicycle affixed to the bed, six days a week.
The researchers found that early cycling within the first four days of mechanical ventilation among patients with stable blood flow is safe and feasible. Patients started cycling within the first three days of ICU admission and cycled about 9 km on average during their ICU stay.

McMaster University http://tinyurl.com/h7bqgbv

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Remarkable recovery in patients diagnosed with newly defined movement disorder

, 26 August 2020/in E-News /by 3wmedia

Researchers from the UCL GOS Institute of Child Health have discovered a new gene change that identifies a type of the movement disorder, muscle dystonia. This new discovery will allow doctors to more easily identify patients who can benefit from treatment so effective that it can restore the ability to walk.
The team from UCL Great Ormond Street Institute of Child Health, along with colleagues at the University of Cambridge and the NIHR Rare Disease Bioresource, identified a change in a gene, called KMT2B, in 28 patients who had dystonia.

Dystonia is one of the most common movement disorders and is thought to affect 70,000 people in the UK. It can cause a wide range of disabling symptoms, including painful muscle spasms and abnormal postures, and can affect walking and speech. In most of the 28 cases, the patients – many of whom were young children who were thought to have a diagnosis of cerebral palsy – were unable to walk.

For some patients, treatment with Deep Brain Stimulation, in which electrical impulses are delivered to a specific area in the brain, either restored or significantly improved independent walking and improved hand and arm movement. In one patient, improvements have been sustained over six years.

Given the findings, the team now suggest that testing for these changes in the gene should form part of standard testing for patients with dystonia. This will allow the most effective treatment to be offered to patients early on.

Dr Manju Kurian, paediatric neurologist at Great Ormond Street Hospital and lead researcher on the paper, says ‘Through DNA sequencing, we have identified a new genetic movement disorder that can be treated with Deep Brain Stimulation. This can dramatically improve the lives of children with the condition and enable them to have a wider range of movement with long-lasting effects,’

‘Remarkably nearly all patients who had Deep Brain Stimulation showed considerable improvements. One patient was able to walk independently within two weeks; in five patients, the improvement has lasted for more than three years. It is an astounding result.’

Former GOSH patient, Dominika, aged 21, was diagnosed with dystonia when she was 13 and had deep brain stimulation treatment two years ago:

When I was young I was able to speak and write normally but I started to have problems with walking when I was about 10. By the time I was 11 or 12, my walking had got worse and I started to notice my writing and speech was deteriorating.
Throughout high school, I had lots of different tests to try and find out what was wrong with me and I first came to GOSH just after my 13th birthday. They gave me lots more tests and told me that I had a type of dystonia which means my muscles aren’t working properly and I can’t move my body as well as I should.

By the time I got to the last year in high school, I was finding walking very difficult and so I started using a wheelchair because it was easier and less painful.

I was given a drug treatment for my dystonia but it didn’t seem to be making things much better so when I was 19, I was offered deep brain stimulation surgery.

Since the operation, life has been good and the surgery has really changed things for me. It has allowed me to walk around mostly unaided. I have seen a big difference with my hands – I can now write and draw, something I wasn’t able to do before. Now, I just do physiotherapy exercises at home to keep my movement as strong as possible. This has meant that I have been able to go to university and I am currently in my final year studying Computer Game Art. I get to practise my drawing using traditional and digital media, and hopefully one day I can get a job doing the two things I love best, drawing and playing video games.

Great Ormond Street Hospital for Children www.gosh.nhs.uk/news/latest-press-releases/2016-press-releases/remarkable-recovery-patients-diagnosed-newly-defined-movement-disorder-0

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The Netherlands
info@interhospi.com

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We may ask you to place cookies on your device. We use cookies to let us know when you visit our websites, how you interact with us, to enrich your user experience and to customise your relationship with our website.

Click on the different sections for more information. You can also change some of your preferences. Please note that blocking some types of cookies may affect your experience on our websites and the services we can provide.

Essential Website Cookies

These cookies are strictly necessary to provide you with services available through our website and to use some of its features.

Because these cookies are strictly necessary to provide the website, refusing them will affect the functioning of our site. You can always block or delete cookies by changing your browser settings and block all cookies on this website forcibly. But this will always ask you to accept/refuse cookies when you visit our site again.

We fully respect if you want to refuse cookies, but to avoid asking you each time again to kindly allow us to store a cookie for that purpose. You are always free to unsubscribe or other cookies to get a better experience. If you refuse cookies, we will delete all cookies set in our domain.

We provide you with a list of cookies stored on your computer in our domain, so that you can check what we have stored. For security reasons, we cannot display or modify cookies from other domains. You can check these in your browser's security settings.

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U kunt meer lezen over onze cookies en privacy-instellingen op onze Privacybeleid-pagina.

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