Kornimate/medical-research-clean huggingface dataset:
study of the quality of life in school aged-children with posterior urethral valves

Conditions: Quality of Life; Posterior Urethral Valve; Renal Insufficiency; Chronic Renal Disease; End Stage Renal Disease; Bladder Dysfunction; Urinary Incontinence

Summary: posterior urethral valves (puv) are the most common congenital obstructive lesion of the urethra, affecting from 1 per 3000 to 1 per 8000 live births. valve ablation usually resolves the obstruction in puv but patients still may suffer of deterioration in renal and urinary functions. renal insufficiency is the most feared long-term complication. up to 50 % of the patients will develop chronic kidney disease (ckd), and up to 20 % will develop end-stage renal disease (esrd) and ultimately will require kidney transplantation. puv is the first urological cause of esrd. progression towards ckd depends on febrile urinary tract infections (utis), severity of a vesicoureteral reflux and bladder dysfunction. bladder dysfunction is due to an overactive and small poorly compliant bladder during infancy. detrusor overactivity usually decreases in childhood and bladder capacity increases. the most common symptom of this bladder dysfunction is urinary incontinence. 60 % of children are continent at the age of 5 years old and 90 % at 10 years old. in case of persistent bladder dysfunction, medical treatment (anticholinergics, alpha-blockers) may be introduced, or even intermittent catheterizations. current scientific literature has very few studies on quality of life (qol) in patients with puv, mostly in adult patients and very small cohorts. men treated for puv in childhood had a good quality of life compared to the normative population, except for sleeping, eating and sexual activity. it seemed that the more severe the urological and nephrological functions were, the lower the qol was. children were only asked about intermittent urinary catheterization, and family point of view has never been collected. however, qol and long-term evolution represent the first concerns of parents-to-be in prenatal counseling, or after diagnosis in an infant with puv. hence, the aim of the study is to investigate the quality of life in school-aged children who had been treated for puv in their first year of life, as measured by the pediatric quality of life inventory version 4.0 (pedsql 4.0).


Eligibility criteria:
inclusion criteria: * male patients and their parents/relatives * aged 6 to 17 years old * treated for puv in their first year of life between 2006 and 2018 * managed in the femme-mère-enfant hospital in lyon exclusion criteria: * children with pre-existing severe cognitive and physical disability (physician's rating) from other condition * children enable to complete qol questionnaire due to mental or communication impairment

Keywords: quality of life posterior urethral valves children adolescents family
efficacy of granulocyte colony stimulating factor (gcsf) in patients with dystrophic epidermolysis bullosa

Conditions: Dystrophic Epidermolysis Bullosa

Summary: this is a feasibility study to see if granulocyte colony stimulating factor (gcsf) is effective as a treatment of dystrophic epidermolysis bullosa (eb). patients will receive one course of treatment with the study drug. the course will be 7 days in length. after receiving gcsf, patients will be followed at 7 and 30 days following the discontinuation of the drug. thirty day follow up can be done via telephone communication with the patient or family.

each patient will be given 10 micrograms per kilogram per day of g-csf subcutaneously for 6 consecutive days. on day 7 each patient will be seen and evaluated in the same manner as on day 0. patients or their parents (if children are too young to reliably respond themselves) will also be asked to rate the following via a visual analog scale of 1-9- oral pain, pruritus, oral pain, swallowing, and overall sense of well-being. a telephone follow-up will be conducted on all patients 28 days after g-csf so as to evaluate if the effect noted on day 7 was sustained.

Eligibility criteria:
inclusion criteria: * each patient must have the diagnosis of severe generalized recessive dystrophic eb (formerly known as hallopeau-siemens rdeb) confirmed by clinical criteria and either of the following: 1. transmission electron microscopy 2. immunofluorescence antigenic mapping and type vii collagen monoclonal antibody staining 3. col7a1 mutational analysis exclusion criteria: * the patient must not have a history of squamous cell carcinoma or any internal malignancy. * female patients who are pregnant. * patients with active signs and symptoms of infection.
evaluation of salt status in patients with cystic fibrosis

Conditions: Salt; Deficit (or Low); Cystic Fibrosis

Summary: the results of the annual check-up will be collected to evaluate the best urinary marker for fractional sodium excretion and salt status will be correlated to clinical outcome measures.

patients with cystic fibrosis need extra salt as they have increased losses through sweat. current advices are to follow and supplement if needed, however the way to follow salt depletion is unclear. the best way is to calculate fractional salt excretion. this needs a simultaneous blood and urine sample for electrolytes and creatinin. urinary surrogate markers have been validated on only 10 patients. at the annual check-up patients with cystic fibrosis receive these measurements. the investigators will collect the measurements and calculate fractional excretion and the possible surrogate markers on urine. further this will be correlated to nutritional and pulmonary status and patient subgroups at risk will be identified.

Eligibility criteria:
inclusion criteria: * all cystic fibrosis patients followed at the gent university cystic fibrosis centre * providing a paired urine and blood sample at the time of their annual check-up exclusion criteria: * transplantation
inferior oblique muscle anteriorization versus anteriorization and resection in dvd with iooa

Conditions: Dissociated Vertical Deviation; Inferior Oblique Overaction

Summary: the goal of this clinical trial is to compare the results of two surgical modalities in patients with dissociated vertical deviation with inferior oblique muscle overaction . the main questions it aims to answer are: * how much does the magnitude of dvd improve after each modality? * is the iooa eliminated? participants will be divided into two equal groups; researchers will compare the efficacy of symmetrical anteriorization of the inferior oblique and adding an additional rescetion to one eye in the second group to see which group had more signifcant reduction in the magnitude of dvd and iooa.

a prospective study was performed on patients with bilateral symmterical dissociated vertical deviation(dvd) and bilateral inferior oblique muscle overaction (iooa) in cairo university hospitals starting from february 2018 through december 2021. patients wetre included in the study if they had a minimum follow up period of 6 months. the study included 54 patients (108 eyes) with manifest dvd and iooa in boths eyes. patients were divided into two equal groups. the paitents in group 1 underwent symmetrical inferior oblique muscle anteriorization, while the patients in group 2 underwent ayymmetrical surgery , where inferior oblique anteriorization was performed in one eye the same manner is in group 1, and the eye with the larger deviation had an additional 3-5 mm rescetion of the inferior oblique muscle along with anteriorization according to the measured dvd difference between both eyes, whether less than or more than 5 prism diopters respectively.

Eligibility criteria:
inclusion criteria: * manifest dvd decompensated to a tropia with free ocular motility * cases with or without horizontal misalignment * cases with or without previous horizontal muscle surgery exclusion criteria: * incomitant, paralytic or restrictive strabismus * eyes with previous inferior oblique muscle surgery * recurrent dvd after surgical treatment * eyes with previous scleral buckling for retinal deatchment

Keywords: dvd iooa io anteriorization io anteriorization with rescetion
bladder cancer and exercise training during intravesical therapy

Conditions: Bladder Cancer

Summary: bladder cancer is the fifth most common cancer in canada and has the eighth highest cancer mortality rate. the treatment for the most frequent type of bladder cancer is surgically removing the tumour followed by six weeks of medication placed within the bladder. there are physical and psychosocial challenges from bladder cancer and its treatment that may affect how patients feel and function, and consequently their quality of life. moreover, bladder cancer patients are at a high risk of their bladder cancer coming back and getting worse. exercise is a low-cost intervention that may lower the chances of bladder cancer coming back or getting worse, manage side effects related to treatment, help patients feel better, and improve quality of life. to date, however, no study has examined if it is safe or even possible for bladder cancer patients to exercise when they are receiving drugs placed into their bladder. the bladder cancer and exercise training during intravesical therapy (brave) trial will be the first study to test the safety, feasibility, and efficacy of exercise in bladder cancer patients during this drug therapy. the investigators will ask some patients to do a supervised exercise program during their drug treatment while other patients will be asked not to exercise. the investigators will compare the 2 groups on how they fare with their bladder cancer treatment. this study will provide information on whether exercise may help patients feel better, function better, and possibly even lower their chances of the disease coming back or getting worse.


Eligibility criteria:
inclusion criteria: * eligible participants will include men and women that (1) are ≥ 18 years old, (2) have a confirmed diagnosis of non-muscle invasive bladder cancer (clinical stage cis, ta or t1), and (3) are scheduled to receive induction intravesical therapy with chemotherapy (e.g., gemcitabine or mitomycin) or immunotherapy (e.g., bcg) agents. exclusion criteria: * exclusion criteria for participants include: (1) not being medically cleared to participate in the exercise intervention by their treating urologist and a certified exercise physiologist using the physical activity readiness questionnaire for everyone (par-q+), (2) having contraindications for cardiopulmonary stress and/or physical fitness tests, (3) already exercising according to the godin leisure-time exercise questionnaire (glteq), (4) not having the ability to read and comprehend english, and (5) not willing to be randomized to a supervised exercise training program or usual care (no exercise) for 12 weeks.

Keywords: non-muscle invasive bladder cancer exercise high-intensity interval training randomized controlled trial
findings and side-effects of flexible endoscopic evaluation of swallowing - the fees-registry

Conditions: Neurogenic Dysphagia; Flexible Endoscopic Evaluation of Swallowing

Summary: neurogenic dysphagia is one of the most frequent and prognostically relevant neurological deficits in a variety of disorders, such as stroke, parkinsonism and advanced neuromuscular diseases. flexible endoscopic evaluation of swallowing (fees) is now probably the most frequently used tool for objective dysphagia assessment in germany. it allows evaluation of the efficacy and safety of swallowing, determination of appropriate feeding strategies and assessment of the efficacy of different swallowing manoeuvres. the literature furthermore indicates that fees is a safe and well-tolerated procedure. the fees-registry aims at evaluating findings and side effects of fees in a heterogeneous collective of patients with neurogenic dysphagia.


Eligibility criteria:
inclusion criteria: * suspected neurogenic dysphagia * patients being scheduled for a fees * written informed consent exclusion criteria: - none
treatment of ilioinguinal entrapment syndrome - an often overlooked cause of chronic pelvic pain

Conditions: Chronic Pelvic Pain

Summary: neuralgic pain caused by entrapment of peripheral nerves is an often overlooked cause of chronic pelvic pain. the objective of the present study was to assess pain and quality of life in women with pain caused by entrapment of the ilioinguinal nerve, iatrogenic after surgery but also found without previous surgery. in a controlled prospective cross-over study 19 women were randomized either to medical treatment or to resection of the nerve. statistically significant improvements were found after surgical resection.


Eligibility criteria:
inclusion criteria: * pelvic pain in which a careful investigation has shown signs of ilioinguinal nerve entrapment exclusion criteria: * drug abuse

Keywords: chronic pelvic pain ilioinguinal nerve entrapment randomized study chronic pelvic pain in women
comparative effectiveness of mr enterography

Conditions: Crohns Disease

Summary: the purpose of this study is to determine the efficacy of ultrasound imaging compared to mre (magnetic resonance enterography) a form of magnetic resonance imaging (mri) in accurately diagnosing and following small bowel crohn disease (sbcd) in children.

computed tomography (ct) is an imaging tool that exposes patients to radiation, and until recently it was the most commonly used imaging method to evaluate small bowel crohn disease. recently, magnetic resonance enterography (mre) which is a form of magnetic resonance imaging that provides detailed images of the bowel and less frequently, ultrasound (us) are replacing ct as the standard of care imaging tool at some institutions. the investigators would like to determine how effective us imaging is compared to mri imaging in accurately diagnosing and following sbcd in children. along with enteric ultrasound (enus) we will also be comparing a new ultrasound technology called ultrasound elastography imaging (uei) for this study in which we will be using a second form of uei called acoustic radiation force impulse (arfi). this technique uses sound waves to asses the stiffness properties of soft tissue. the study will compare costs, patient preferences, and imaging accuracy.

Eligibility criteria:
inclusion criteria: * pediatric patients under 18 years age. * recently diagnosed with small bowel crohn's disease and have not received any prior treatment for this condition exclusion criteria: * are pregnant. * require sedation to have the mre exam. * cannot tolerate small enclosed spaces for 60 minutes. * have kidneys that are poorly functioning (egfr \<30ml/min)
candidate gene association study with injury in elite male youth football players

Conditions: Injuries; Genetic Change

Summary: understanding how candidate genes, previously associated with injury susceptibility, influence the incidence of muscle, bone, ligament, and tendon injuries across the development pathway of elite footballers may provide valuable insight into inherent injury predisposition to support the long-term development of every individual. therefore, the aim of the present study was to investigate the association between candidate genetic variants and muscle, bone, ligament, and tendon injuries in elite football with sub-analysis of the influence of age and maturation on injury susceptibility.

genetic variants in several candidate genes which code for structural constituents (col1a1 rs1800012, col1a2 rs412777, col5a1 rs12722 and actn3 rs1815739), regulatory components (ace rs1799752, esr1 rs2234693 and mmp3 rs679620) and transcription factors (vdr rs2228570 and gdf5 rs143383) affecting the form, function and injury susceptibility of muscle, bone, ligament, and tendon tissue will be associated with overall injury, non-contact, bone, ligament, tendon and apophysitis injury risk in elite male youth and adult footballers.

Eligibility criteria:
inclusion criteria: * elite male footballer player registered at fulham football club exclusion criteria: * female no longer registered at fulham football club

Keywords: snp apophysitis fracture strain sprain genetic injury
a study to explore efficacy and safety of asp015k in subjects with moderate to severe psoriasis

Conditions: Psoriasis

Summary: the purpose of this study is to explore the efficacy and safety of multiple, escalating doses of asp015k when compared to placebo in subjects with moderate to severe plaque psoriasis.

following completion of at least 1 week of study drug for all subjects in group 1, the sponsor will review the safety information of these subjects prior to enrolling off-treatment subjects into the next dose group. dose escalation will continue in this manner (unless stopping criteria are met) until all groups have completed the study.

Eligibility criteria:
inclusion criteria: * subject has moderate to severe plaque psoriasis for 6 months or longer with at least 10% body surface area (bsa) affected * subject must be a candidate for phototherapy and/or systemic therapy exclusion criteria: * subject has non-plaque psoriasis or drug-induced psoriasis * subject is on systemic psoriasis therapy within 56 days or 5 half-lives, whichever is longer, prior to first dose of study drug * subject has a positive tb skin test within 3 months of screening or at screening * subject has an abnormal chest x-ray

Keywords: asp015k psoriasis
injured spinal cord pressure evaluation study - transverse myelitis

Conditions: Transverse Myelitis

Summary: iscope-tm will use intra spinal monitoring techniques to assess cord perfusion and metabolism in patients with severe spinal cord damage from transverse myelitis

transverse myelitis (tm) is a rare inflammatory condition of the spinal cord. it is characterised by rapid onset of motor, sensory or autonomic dysfunction causing neurological deficit. it has a diverse range of causes; most commonly it is associated with multiple sclerosis and neuromyelitis optica also known as devic's disease or devic's syndrome, is a heterogeneous condition consisting of the simultaneous inflammation and demyelination of the optic nerve (optic neuritis) and the spinal cord (myelitis). it affects approximately 1900 adults and children in the uk annually, with 350 cases per year of unknown cause. outcome in tm is variable; e.g. neuromyelitis optica mortality can be 30% . there is a relationship between the severity of neurological symptoms at presentation and the eventual outcome. when a patient is asia (american spinal injuries association) a or tetraplegic at presentation, they are less likely to recover than when asia b/c or paraplegic. approximately 30% of patients will be asia a-c after a tm episode. there are several pathological mechanisms which could increase the risk of decreased blood supply and further neurological deficit in tm. the iscope study has shown that in traumatic spinal cord injury when swelling causes mechanical compression of the cord against the dura there is increased intra spinal pressure (isp). the investigators propose to monitor the isp and spinal cord metabolites in 10 tm patients with mri evidence of a swollen enlarged spinal cord. there has never been a study looking at isp in tm patients before. the optimum blood pressure in patients with tm is not known. the investigators aim to observe a previously unrecognised pathological mechanism of injury in tm. in the future this could lead on to novel treatments to improve drug delivery and neurological outcome in a condition otherwise associated with a poor outcome.

Eligibility criteria:
inclusion criteria: * transverse myelitis (as defined by tm working group 2002) * mri evidence of swollen enlarged spinal cord. defined as a larger cord diameter compared to the adjacent normal signal intensity spinal cord, with loss of cerebrospinal fluid space between cord and dura mater. * age 18 - 70 * severe spinal cord injury (asia a - b) * monitoring to start within 72 h of mri * capacity for informed consent exclusion criteria: * major co-morbidities likely to influence outcome * high anaesthetic risk precluding surgery * multiple separate lesions on mri spine * lacking capacity or unable to consent * pregnancy
africa ready malaria screening

Conditions: Malaria

Summary: this study aims to develop immuno-analytical assays for testing the titres of malaria antibodies in ghanaian patients' and/or donors' sera using a recombinantly produced msp119 fusion protein and/or msp119-derived synthetic peptides as antigens.

in this study, immuno-analytical assays will be developed for determining the titres of malaria antibodies in sera of two groups (malaria patients and donors/healthy volunteers) using a recombinantly produced msp119 fusion protein and/or msp119-derived synthetic peptides as antigens. individuals in the two groups presenting to shai-osudoku district hospital will be screened for signs and symptoms of malaria according to the who criteria. those within the inclusion and exclusion criteria will be introduced to the study through informed consent for adults (18 years and over) or parents/guardians for children below 12 years and assent for adolescents between 12 and below 18 years, along with informed consent from their parents. enrolled study participants' demographic data and vital signs will be captured electronically onto the crf. patients will have their clinical history and detailed physical examination done by the study clinicians and then be sent to the laboratory for investigations to confirm the malaria diagnosis. the results of patients will be communicated to the study clinician to commence the appropriate treatment. at the of the study, the results of all assays will be analyzed to determine if this test can be used to diagnose malaria infection.

Eligibility criteria:
inclusion criteria: * patients with confirmed malaria (uncomplicated and complicated cases) are diagnosed by the national guidelines. * healthy individuals without confirmed malaria per the national guidelines. * adults and parents or guardians of children below 12 years willing to participate based on signed informed consent. * willing to give assent to adolescents between the ages of 12 and below 18 years. * willing to give a blood sample for the necessary investigations as explained in the informed consent. * willing to adhere to study procedures and a follow-up visit at the clinic, hospital, or health facility. exclusion criteria: * anyone refusing informed consent (or assent for adolescents) to be part of the study. * refusal to study procedures or giving of sample for the necessary investigations.
sleep & pain in juvenile arthritis

Conditions: Arthritis, Juvenile

Summary: childhood arthritis is an important cause of pain for affected children and youth (adolescents). many youth with arthritis also have trouble sleeping. they often struggle to sleep through the night, wake up earlier, and are sleepier during the day compared to healthy children. our research group, among others, has shown a strong link between sleep and pain. the main purpose of this study is to assess the impact of changing sleeping patterns on pain, and disease activity, in teenagers with arthritis. we think that better sleep will directly lead to better health.


Eligibility criteria:
inclusion criteria: * patient in the rheumatology clinic at sickkids * all subtypes of jia, as per the ilar criteria * a baseline pain score of ≥ 1 on a visual analogue scale * age from 12-18 years old * capable of providing informed consent form themselves, as judged by the clinical team exclusion criteria: * a known sleep disorder (e.g., obstructive sleep apnea, etc.) * a high probability of having obstructive sleep apnea as determined by the pediatric sleep questionnaire * currently taking medication with the intent to impact sleep (e.g., zolpidem, benzodiazepines, etc.) * taking corticosteroids (which may adversely affect sleep) * obligations that require a bed time later than 10:00 pm or a wake time earlier than 5:30 am during the study period * daily consumption of \> 1 coffee or "energy drink" and/or \> 3 caffeinated carbonated beverages * do not speak/understand english with enough proficiency to complete all study related tasks, as judged by the clinical team