Kornimate/medical-research-clean huggingface dataset:
observational study in patients with cyclin-dependent kinase-like 5 deficiency disorder

Conditions: Cyclin-Dependent Kinase-Like 5 Deficiency Disorder

Summary: observational, noninterventional, 3-year study to examine the presence of detectable differences in neurocognitive, developmental, motor, neurophysiologic, and quality of life measures over time in patients with cyclin-dependent kinase-like 5 deficiency disorder.

this is an observational study to examine the presence of detectable differences in neurocognitive, developmental, motor, neurophysiologic, and quality of life measures over time in approximately up to 100 patients aged birth to 55 years and diagnosed with cyclin-dependent kinase-like 5 deficiency disorder. operational performance across age groups and languages will be assessed throughout the study, and baseline cohort characteristics will be assessed throughout enrollment.

Eligibility criteria:
inclusion criteria: 1. documented diagnosis of cyclin-dependent kinase-like 5 (cdkl5) deficiency disorder with pathogenic or likely pathogenic of cdkl5 variants 2. ages newborn to 55 years old 3. parent/caregiver who is willing and capable of providing written informed consent 4. parent/caregiver lives with or has daily contact with study participant and able to provide consistent information across the study exclusion criteria: 1. any clinically significant neurocognitive deficit not attributable to cyclin-dependent kinase-like 5 (cdkl5) deficiency disorder or a secondary cause that may, in the opinion of the investigator, confound interpretation of study results (e.g., extreme prematurity, other genetic variants, unclassified cdkl5 variant, abnormal brain imaging, imaging and/or injury not otherwise attributable to cdd). 2. any condition that, in the opinion of the investigator, would put the patient at undue risk or make it unsafe for the patient to participate 3. any condition which would make the individual or the caregiver, in the opinion of the investigator, unsuitable for the study

Keywords: cyclin-dependent kinase-like 5 deficiency disorder cdkl5 cdd
a trial to determine the efficacy of near infrared spectroscopy to detect intracranial hemorrhage in children

Conditions: Intracranial Hemorrhage

Summary: to diagnose bleeding inside the head, children need to have a ct scan or mri of their heads. not all doctors order these though, especially when there is no history of injury or when children don't look too sick. unfortunately, this means that some children's bleeding doesn't get diagnosed as early as it could. this study wants to find a way to detect bleeding inside the head without using a ct scan or mri.


Eligibility criteria:
inclusion criteria: * all children under 3 years of age who undergo a ct of the head or mri of the head. exclusion criteria: * lack of parental consent * neurosurgical intervention between ct/mri and nirs scanning. * scalp hematoma

Keywords: near infrared spectroscopy diagnosis children
warm water and unsedated colonoscopy

Conditions: Gastrointestinal Diseases; Digestive System Diseases

Summary: unsedated or slightly sedated colonoscopy has fast recovery time, less cost and lower or no incidence of drug-related side effects. may be slightly painful or discomforting for the patient. based on numerous recent reports, the investigators designed this randomized controlled trial hypothesizing that the use of warm water irrigation versus air insufflation during the insertion phase of colonoscopy might increase the global tolerability of the examination and the proportion of patients undergoing complete colonoscopy without sedation or with a low dose of sedatives.


Eligibility criteria:
inclusion criteria: * 18 years to 85 years * adult patients willing to undergo colonoscopy without routine initial sedation exclusion criteria: * refuse to initiate colonoscopy without routine sedation * inadequate bowel preparation * incapacity to give informed consent

Keywords: colonoscopy warm water method hydrocolonoscopy unsedated colonoscopy
one-year persistence to treatment of participants receiving flixabi or imraldi: a french cohort study

Conditions: Arthritis, Rheumatoid; Spondylitis, Ankylosing; Arthritis, Psoriatic; Crohn's Disease; Colitis, Ulcerative

Summary: a study to describe the one-year persistence in participants treated by flixabi (infliximab) or imraldi (adalimumab) as prescribed by the physician for each of the 5 following indications: rheumatoid arthritis (ra), ankylosing spondylitis (as), psoriatic arthritis (psa), crohn's disease (cd) \[adults and children\] and ulcerative colitis (uc) \[adults for both treatments and children only for flixabi\].


Eligibility criteria:
inclusion/ exclusion criteria key inclusion criteria: * adult participant (18 years and over) * treated for one of the following conditions: ra, as, psa, cd, uc. * either active substance naïve or treated with the originator or another biosimilar at baseline. * for whom the treating physician has decided to treat by (naïve) or switch from originator or another biosimilar to flixabi or imraldi. * participants who had initiated flixabi or imraldi at most 12 months before the baseline will also be included in the cohort. * paediatric participants (6-17 years): * treated for one of the following conditions: cd, uc. * either active substance naïve or treated with another biosimilar at baseline. * for whom the treating physician has decided to treat by (naïve) or switch to flixabi (for both indications) or imraldi (only for crohn's disease). * participants who had initiated flixabi or imraldi at most 12 months before the baseline will also be included in the cohort. key exclusion criteria: * participant treated for psoriasis. * participant who are not to be followed up in the same investigator site for 2 years after baseline. note: other protocol defined inclusion/exclusion criteria may apply.
borderzone sampling

Conditions: High Grade Glioma; Glioblastoma

Summary: on regular (diagnostic) mri images brain tumors can show "contrast enhancement": uptake of an intravenously administered contrast agent can cause an enhancement pattern that is seen as a white area on a frequently used mri protocol ("t1 weighted imaging"). high grade gliomas are a common brain tumor that share this enhancement pattern. the goal of surgery is to resect this contrast enhancing part without causing additional neurological damage. intraoperative mri (imri) is a helpful tool in achieving this goal, because it can provide updated images during resection and correct for deformations that occur in the brain during surgery. these deformations make preoperative images that are used for standard neuronavigation systems less reliable. however, due to manipulations during surgery, the contrast uptake during surgery may differ from contrast uptake in diagnostic mri. this study aims to relate contrast enhancement on imri and tumor characteristics on tissue samples from the tumor. when the neurosurgeon considers the resection of the high grade glioma to be complete, an imri scan will be made, and tissue sampling will be performed on the borderzones of the tumor or tumor resection cavity respectively. this will provide insight in the relation between contrast enhancement on imri and the presence of tumor tissue. such knowledge is important to improve effectiveness and safety of imri guided brain tumor resection.


Eligibility criteria:
inclusion criteria: * supratentorial brain tumor, on contrast enhanced mri suspect for a high grade glioma * indication for resection of the tumor * age ≥ 18 years * who performance scale ≤ 2 * asa class ≤ 3 * good knowledge of the dutch language * informed consent exclusion criteria: * recurrent tumor * multiple tumor localizations * prior radiotherapy on the skull * prior chemotherapy
digital transformation of continuity of care for peripherally inserted central catheters: spadcare experience

Conditions: Infusions, Intravenous; Administration, Intravenous; Home Infusion Therapy; Parenteral Nutrition, Home; Central Venous Catheters; Catheterization, Central Venous; Catheterization, Peripheral; Vascular Access Devices; Patient Education as Topic; Patient Participation; User-Computer Interface; Smartphone; Mobile Applications; Computers, Handheld; Digital Health; Nursing; Care Givers; Delivery of Health Care; Home Nursing; Self Administration; Adverse Effects; Catheter-Related Infections; Telemedicine

Summary: the study focuses on patients who require outpatient infusion of therapy ("infusions, intravenous"\[mesh\]) "administration, intravenous"\[mesh\] ("home infusion therapy"\[mesh\]) "parenteral nutrition, home"\[mesh\] via a peripherally inserted central catheter (picc) ("central venous catheters"\[mesh\] "catheterization, central venous"\[mesh\] "catheterization, peripheral" \[mesh\] "vascular access devices"\[mesh\] )

the patients, who receive training ("patient education as topic"\[mesh\] "patient participation"\[mesh terms\] ) via an app on their personal mobile phone ("user-computer interface"\[mesh\] "smartphone"\[mesh\] "mobile applications"\[mesh\] "computers, handheld"\[mesh\] "digital health"\[mesh\] are able to perform specialized care ("nursing"\[mesh\]) care"\[mesh\] "delivery of health care"\[mesh:noexp\] "home nursing"\[mesh\] "self administration"\[mesh\] to reduce complications ("adverse effects"\[mesh subheading\] "catheter-related infections"\[mesh\] ) so that they are monitored in real time by those responsible for the catheter. ("telemedicine"\[mesh\]

Eligibility criteria:
inclusion criteria: * patients \>18 years. * sign the informed consent form. * have a smartphone and accept the use of the app. * patient with a picc inserted by the infusion and vascular access team of the university hospital of navarra and with a planned use of at least one month. exclusion criteria: * patients with limitations in the use of digital resources or lack of smartphone. * patients who do not want to install the app on their smartphone * patients who do not authorize access to their computerized medical record (hci).

Keywords: catheterization, peripheral vascular access devices patient education as topic telemedicine mobile applications
the effects of multi-modality physiotherapy in delaying or preventing covid-19 patient from admitting to icu

Conditions: Covid19; Severe Systemic Illness Respiratory Muscle Fatigue

Summary: this study aims to evaluate the effectiveness of respiratory muscle training with covid-19 patient, who has underlying health conditions, in order to delay or prevent them from admitting to icu.


Eligibility criteria:
inclusion criteria: * non- intubated patient diagnosed with moderate to severe pneumonia (confirmed by chest x-ray and officially reported) as secondary to covid-19 with one more symptom such as: 1. respiratory rate at ≥ 20 breath.min-1. 2. oxygen saturation (sato2) ≤ 90% at rest on room air. 3. arterial partial pressure of oxygen (pao2) ≤ 80 mmhg at resting. 4. pao2/fio2 ratio or p/f (is the ratio between the arterial partial pressure of oxygen and the percentage of oxygen supplied) \< 300mmhg. exclusion criteria: 1. patient that has received upper abdominal or thoracic surgery recently (≤ 3 months). 2. cancer patients. 3. pregnant patients. 4. patient mentally unstable. 5. patient with unstable cardiovascular or neurological functions. 6. patients refusing to participate in this clinical trial. 7. patient less the 21 years old (according to kuwaiti law). 8. patients who have a language barrier who cannot understand arabic or english.

Keywords: respiratory muscle strength inspiratory muscle training respiratory physical therapy patient exercise training maximal inspiratory pressure
rapid detection of group b strep- 35-37 week study

Conditions: Group B Streptococcus Neonatal Sepsis

Summary: the purpose of this study is to determine whether a rapid bedside diagnosis of group b strep growing in the vagina and rectum can be performed with similar success to the routine culture.

early onset group b strep (gbs) neonatal infections is one of the leading infections in newborns, nearly all of which are acquired by vertical transmission at the time of childbirth. most cases can be prevented by identifying women who are colonized with gbs in the vaginal-rectal area and giving these colonized women prophylactic antibiotics in labor. about 15 -20% of women are colonized and nearly all of these women are asymptomatic. because it takes up to 48 hours to obtain culture results, it is currently recommended to perform cultures in the clinic about 3 - 5 weeks prior to their due date and then prophylaxing those women colonized with gbs with antibiotics when they come in to labor. there are several downsides to this strategy. all women who present with preterm labor are treated until culture results become available (overtreatment), women who go into labor while waiting for culture results are all treated (overtreatment), prior studies have shown 33% of women are positive at 35 weeks, but negative at birth (overtreatment) and 10% are negative at 35 weeks and positive at birth (undertreatment), lost or missing culture results (over- or undertreatment). using microfluidics and fluorescent pcr, a new test can identify gbs reliably in 30 to 45 minutes in vitro. this study proposes to evaluate the clinical performance (sensitivity, specificity, positive and negative predictive value) of the microfluidic rapid gbs technique in selected women presenting at 35 - 37 weeks to antenatal clinics at the university of michigan compared to standard culture.

Eligibility criteria:
inclusion criteria: * women 18 years of age or older * mentally capable of giving informed consent * presentation for regularly scheduled 35-37 week cultures exclusion criteria: * inability to give informed consent * evidence of ruptured membranes by clinical or laboratory criteria * use of any antibiotic within the previous 7 days

Keywords: streptococcus group b pregnancy
automatic vs. manual optic disc planimetry

Conditions: Open Angle Glaucoma

Summary: manually and automatically by mashing learning algorithm optic disc will be evaluated (planimetry).

cross-over non-randomized case-series. arm 1 (manual segmentation): manually marking of the boundaries of the optic disc and it's excavation on color photographs of the optic disc. arm 2 (automated segmentation): automatic detection of the boundaries of the optic disc and it's excavation. calculation of cup size, size of excavation, cup-to-disc ratio, and rim area. comparison of all parameters of both arms and computing of agreement.

Eligibility criteria:
inclusion criteria: * open-angle glaucoma exclusion criteria: * no fundus photography of the optic disc performed
biological mesh repair of complex hernias in high risk patients

Conditions: Hernia

Summary: complex ventral hernia repair is a significant surgical challenge with high frequencies of both wound complications and recurrence. the ventral hernia working group (vhwg) described in 2010 recommendations regarding grading and technique of repair, which we have followed since november 2011.the purpose of the this study was to evaluate our results after biologic mesh repair of complex hernias.

obervational study primare outcome: surgical site occurence secondary outcome: hernia recurrence biolocal mesh: ventral hernia repair in a population with severe co-morbidity and contaminated hernia.

Eligibility criteria:
inclusion criteria: abdominal wall reconstruction with biological mesh - exclusion criteria: pregancy, -

Keywords: biological mesh contaminated hernia abdominal wall reconstruction
genomic and proteomic profiling targets influenced treatment in metastatic breast cancer

Conditions: Metastatic Breast Cancer; Breast Tumor; Advanced Gynecologic Cancer

Summary: the primary objective is to examine the impact on progression-free survival of targeted therapy for breast cancer suggested by proteomic and genomic profiling.

to explore the impact of targeted therapy for breast cancer suggested by proteomic and genomic profiling using rpma, targeted resequencing, ihc analysis, wgs, rna-seq, and exome sequencing on progression-free survival. when a molecular target cannot be identified, the patient will be treated with a therapy selected on an empirical basis by the investigator/treating physician at the individual site and will be followed for survival status. only available, fda-approved agents will be used.

Eligibility criteria:
inclusion criteria: * life expectancy of \>3 months * diagnosis of metastatic breast cancer or an advanced gynecological malignancy with measurable disease * age greater than or equal to 18 years * ecog performance status of 0-1 * able to undergo two biopsies to obtain tissue with first biopsy required and second biopsy optional * have failed or unable to tolerate previous treatment regimen * adequate organ and bone marrow function as defined by anc ≥ 1.5 x 109/l; hgb 9 g/dl; platelets greater than 100 x 109/l; creatinine ≤ 1.5 mg/dl; bilirubin ≤ 2.5 x uln; ast and alt ≤ 2.5 x uln (or ≤ 5 x uln if due to underlying liver metastases); inr ≤ 1.5 x uln (except in the case of anticoagulation therapy) exclusion criteria: * metastatic lesions that are not accessible to biopsy * symptomatic cns metastasis * previous history of another malignancy within 5 years of study entry * uncontrolled concurrent illness * known hiv, hbb, and/or hcv infection * pregnant or breast feeding or childbearing potential and not using adequate birth control
the effects of individualized nutritional intervention program in malnutrition elderly with pneumonia

Conditions: Pneumonia

Summary: to investigate the effects of an individualized nutritional intervention programs (inips) on nutritional status and readmission rate in older adults with pneumonia during hospitalization and 3 and 6 months after discharge.

method: eighty-two malnourished older adults with primary diagnosis of pneumonia participated. patients were randomly allocated to either a nutrition intervention (ni) group or a standard care (sc) group. participants in the ni group received an inip according to energy and protein intake requirements in addition to dietary advice based on face-to-face interviews with their family members during hospitalization. after discharge, phone calls are adopted for prescribing inips. anthropometry (i.e., body mass index, limb circumference, and subcutaneous fat thickness), blood parameters (i.e., albumin and total lymphocyte count), hospital stay, mini-nutritional assessment-short form (mna-sf) score, target daily calorie intake, total calorie intake adherence rate, and three-major-nutrient intake were assessed during hospitalization and 3 and 6 months after discharge. both groups received regular follow-up through phone calls. furthermore, the rate of readmission resulting from pneumonia was recorded after discharge.

Eligibility criteria:
inclusion criteria: * primary diagnosis of pneumonia by a physician * age more than 65 years * malnutrition status indicated by body mass index (bmi) \<18.5 kg/m2 or mini-nutritional assessment-short form (mna-sf) score≤7 exclusion criteria: * renal insufficiency (glomerular filtration rate \[gfr\] \<60 ml/min/1.73 m2 or gfr staging of g3b-g5) * cancer * hospital stay \<7 days

Keywords: nutritional intervention malnutrition respiratory disease
remdesivir efficacy in coronavirus disease

Conditions: COVID

Summary: covid 19 treatment using remedesvir.

covid 19 treatment using remedesvir. is this drug effective?

Eligibility criteria:
inclusion criteria: * covid 19 patients exclusion criteria: * allergy or contraindication to the drug
knowledge and practices of adr reporting in lmics

Conditions: Adverse Reaction

Summary: the reported literature suggests that knowledge about pharmacovigilance is on a lower side and adr reporting is not common in developing countries. this survey may help us to identify the common gaps in knowledge and practices about pharmacovigilance so that we can devise the strategy on the basis of outcome.

safety evaluation of a product in a market is like a moving ball which need re-evaluation as the data gather in its life cycle.(1) as per the definition of international society of harmonization and world health organization, adverse reaction is adverse drug reaction (adr) is defined as "a response to a drug which is noxious and unintended and which occurs at doses normally used in man for prophylaxis, diagnosis, or therapy of disease or for modification of physiological function." (2) adverse reaction and adverse event are interchangeable use in pharmacovigilance sector by knowing the difference is that adr term used when drug is causing the effect (1). the frequency of adr is getting higher due to the increasing prevalence of chronic disease with the growing trend of combination drugs (3). the non-profitable organization of pharmacovigilance is playing tremendous role in disseminating the awareness of proper usage of drug globally.(3) according to uppsala database statistics, approximately 3 million reports were listed as suspected adrs. (4) nearly 6.7% of hospitalizations were due to serious adrs (5)

Eligibility criteria:
inclusion criteria: - participants who would like to voluntarily fill the survey form exclusion criteria: * students * other than health care professionals (including but not limited to physicians, doctors, nurses and/or pharmacist)