Kornimate/medical-research-clean huggingface dataset:
genetic risk: whether, when, and how to tell adolescents

Conditions: Huntington Disease; Hereditary Breast and Ovarian Cancer; Hereditary Cancer; Hereditary Non-polyposis Colon Cancer; Hereditary Non-Polyposis Colorectal Cancer Syndrome

Summary: this study is being conducted to learn more about family communication of genetic risk information. semi-structured interviews lasting up to one hour will be conducted with three populations: parent/child pairs at risk for huntington's disease, parent/child pairs at risk for hereditary cancer, and genetic counselors.

the investigators currently lack an adequate understanding of how parents and children feel about genetic risk/status, how it is communicated, and how it influences wellbeing and family relationships. this understanding is vital in order for genetic counselors and other health care professionals to provide the best guidance possible to families. however, little research has been conducted on the impact of genetic risk information or testing on children from the perspective of the child. the research proposed here is uniquely positioned to help fill this gap. for this study, the investigators will interview 15-20 parent/child pairs who are at risk for huntington's disease (hd), 15-20 parent/child pairs who are at risk for hereditary cancer, and 15-20 certified genetic counselors. interviews will last no more than one hour and will be conducted at a time and place that is convenient for the participant. the investigators will offer participants a choice of conducting the interview in a private conference room at the berman institute of bioethics, or remotely by skype or telephone. parents and children will be interviewed separately. parents will be asked about the decision process behind how and when they disclosed genetic information to their child, style of family communication, advice for other parents in similar situations, and other questions related to the subject of communication of genetic information to minors. children will be asked about their experience learning genetic risk information, style of family communication, how they felt, advice for other kids in similar situations, and other questions related to the subject of communication of genetic information to minors.

Eligibility criteria:
inclusion criteria: * parents at-risk for hd, affected by hd, or be the spouse/partner of someone living who at risk for or affected by hd. * parents who have or have had a diagnosis of hereditary cancer, or the spouse/partner of someone living who has or has had had a diagnosis of hereditary cancer. * children ages 15-17 who are at risk for either hd or hereditary cancer exclusion criteria: * parents and children who have not yet communicated about genetic risk * children younger than age 15
effects of a walking intervention in older patients with chronic kidney disease: feasibility study

Conditions: Chronic Kidney Disease

Summary: chronic kidney disease (ckd) affects more than 26 million individuals (13 percent) of the u.s. population, with a projected 70 percent increase by the year 2015 to over 40 million individuals. impairments in physical function and mobility limitations have been reported in older chronic kidney disease patients, however the consequences of impaired functioning on participation in daily life and quality of life have not been studied. early identification and interventions to mitigate deterioration in physical function and mobility should lead to improved health and quality of life outcomes in older patients with chronic kidney disease. although older individuals with chronic kidney disease have reduced survival expectancy, maintaining physical function and mobility may contribute to longer active life expectancy, and higher quality of life despite their diagnosis.


Eligibility criteria:
inclusion criteria: * male and female patients over the age of 60 years * diagnosed with moderate to severe ckd (stage 2-4) * ambulatory (with or without use of an assistive device such as a cane or walker) * living in the community, cognitively able to provide consent and understand directions for the tests * cognitive ability to understand and carry out an independent home walking program * access and ability to communicate with study staff on a weekly basis and available for follow-up testing. exclusion criteria: * inability to carry out a program of walking independently at home * unavailable for follow-up testing, estimated gfr \>60 ml/minx1.73m2 and \< 15 ml/minx1.73 m2 * recent cardiac event (within the past 6 months) * uncontrolled hypertension * uncontrolled diabetes * pulmonary disease that may limit the ability to progress with walking * progressive neuromuscular disease * any orthopedic or neuromuscular condition that may be exacerbated by increased walking activity * diabetic foot ulcer.

Keywords: chronic kidney disease physical function
ufpti 2105-br05: improving breast radiotherapy setup and delivery using mixed-reality visualization

Conditions: Breast Cancer

Summary: the purpose of this study is to compare the accuracy, set-up time, and amount of image-guided radiotherapy (igrt - a system that helps line up the radiation beam with the tumor for treatment) needed when mixed-reality guided radiotherapy is used for treatment set-up.


Eligibility criteria:
inclusion criteria: * targets adult patients who are planning to undergo photon or proton radiation therapy at ufhpti for treatment of the breast or chest wall. as this type of treatment is rare in men, the study will focus on female patients only. exclusion criteria: * male subjects
nt-probnp-based heart failure screening and prevention trial in patients with type 2 diabetes: strong-dm study

Conditions: Type 2 Diabetes; Diabetic Cardiomyopathy; Heart Failure; Cardiometabolic Diseases

Summary: a pragmatic, randomized clinical trial to evaluate the effect of a heart failure (hf) risk assessment and prevention strategy incorporating hf clinical risk scores (watch-dm) with cardiac biomarker (nt-probnp) paired with a clinical decision support tool to implement an intensive prevention strategy among patients with high risk focused on implementation of evidence-based hf preventive therapies.

primary care providers will be randomized to receive notifications via the electronic health record if any patients with diabetes have high heart failure risk based on a combination of clinical risk scores(watch-dm), and biomarkers (nt-probnp). providers will be provided recommendation to initiate evidence based therapies (sglt2 inhibitors, glp1 agonists, non-steroidal mra) , obtain expert e-consultation, or refer the patient to a cardiometabolic risk management program.

Eligibility criteria:
inclusion criteria: * primary care provider that sees diabetes patients in clinic exclusion criteria: * provider does not see patients with diabetes

Keywords: pragmatic clinical trial heart failure cardiovascular prevention
prospective study on the treatment of unsuspected pulmonary embolism in cancer patients

Conditions: Unsuspected Pulmonary Embolism

Summary: the same initial and long-term anticoagulation is suggested for unsuspected pulmonary embolism as for patients with symptomatic embolism. based on these indications, cancer patients with unsuspected pulmonary embolism would be anticoagulated for at least 6 months or until the disease is active, which in most cases would mean indefinite treatment. in fact, dedicated studies on the treatment of unsuspected pulmonary embolism are missing, leaving doubts over the need for (indefinite) anticoagulation which exposes these patients to an increased risk of major bleeding events. concerns over the need for anticoagulant treatment may especially hold for pulmonary embolism of the distal pulmonary tree since segmental and sub-segmental pe seem to have a more benign course than more proximal embolism. the scope of this study is to evaluate the current treatment approaches for unsuspected pulmonary embolism and to assess their efficacy and safety in a large prospective cohort of cancer patients.


Eligibility criteria:
inclusion criteria: * cancer patients with a first diagnosis of unsuspected pe exclusion criteria: 1. age \<18 years; 2. ongoing anticoagulant therapy for previous vte or indications for long-term anticoagulation other than deep vein thrombosis (dvt) or pe; 3. life expectancy less than 3 months.

Keywords: unsuspected pulmonary embolism cancer
latin american survey of nutrition and health / estudio latinoamericano de nutrición y salud

Conditions: Dietary Habits; Physical Activity; Overweight and Obesity

Summary: this study aims to make a proper scientific assessment on the dietary intake and physical activity levels of a representative sample of the urban population of 8 latin american countries (argentina, brazil, chile, colombia, costa rica, ecuador, perú and venezuela). the study was based on complex, multistage sample design, stratified by conglomerates, being all regions of each country represented, and random selection of main cities within each region according to probability proportional to size method. sample will be stratified by gender, age (15 to 65 years old), and socioeconomic level. socioeconomic levels will be balanced and divided in three strata (high, medium and low) based on national indexes used in each country. all the study sites are university-based and will adhere to a common study protocol for training, implementation of fieldwork, data collection and management, and quality control procedures to be performed simultaneously. all participants will be required to provide a written informed consent. a pilot study at small scale will be performed in each country in order to test procedures and tools involved in elans. anthropometric variables, including body weight, height, waist, hip and neck circumferences will be measured according to a standardized protocol. nutritional intake evaluation will be performed using two 24-hour dietary recalls, with 'multiple pass' procedure and a food frequency questionnaire. nutritional data will be entered in nutrition data system for research (nds-r, minnesota university) after a harmonization process between local foods and ndsr database. physical activity and energy expenditure will be assessed by ipaq-long version questionnaire and 7-day accelerometry.


Eligibility criteria:
inclusion criteria: * males and females * 15 to 65 years old exclusion criteria: * adolescents without assent and parent´s or legal guardian´s permission will be excluded * any adolescent or adult with mental and/or physical disability will be excluded. * any adolescent or adult with a chronic or acute illness that may affect normal eating behavior or energy expenditure will be excluded. * pregnant and nursing women of a child younger than 6 months will be excluded. * any adolescent or adult who is not able to read will be excluded. * any adolescent or adult who is not present at or refuses to accept the second visit will be excluded. * any adolescent or adult living in any residential settings different from a household (hospitals, regiments, homes, such as old-age homes, etc.) and mobile homes or trailers are excluded.
severe eosinophilic asthma phenotypes during childhood have various origins

Conditions: Severe Asthma; Asthma in Children

Summary: study of the clinical evolution at 10 years of children from the samp cohort (severe asthma, eosinophilic or not, allergic or not) in order to understand the different possible evolutions of these phenotypes at different ages.

multiple sensitizations but also blood eosinophilia are associated with the persistence of exacerbations during childhood. the pivotal role of eosinophilia in the pathophysiology of allergic asthma and more generally of severe asthma in the pediatric population has made it an important research topic for many years. the indirect demonstration of bronchial inflammation by analyzing blood eosinophilia is common practice, especially when monitoring the effectiveness of biotherapies. however, blood eosinophilia is not always clearly related to bronchial eosinophilia. on the other hand, several teams have recently sought to highlight the recurrence of allergen sensitization profiles associated with severe asthma, in order to identify predictive factors of clinical evolution. finally, recent studies have shown that the nasal microbiota plays an important role in the onset, development and severity of asthma. our study will allow us to study the clinical evolution at 10 years of the children from the samp cohort (severe asthma, eosinophilic or not, allergic or not) in order to understand the different possible evolutions of these phenotypes at different ages. these phenotypic trajectories have an important therapeutic implication, leading to the prescription of personalized treatments, in particular biologics (monoclonal antibodies). primary objective to evaluate, in children with moderate to severe asthma, the control of asthma according to the therapeutic load, atopic pathologies during childhood and initial serum levels of blood eosinophils and biomarkers of eosinophil activation secondary objective evaluate the evolution of asthma phenotypes according to the associated atopic pathologies (allergic rhinitis, atopic dermatitis and food allergy), according to the number of atopic comorbidities and their severity. study of the microbiota in children followed for moderate to severe asthma. practical procedure the investigator record the new tests prescribed as part of the routine care of these patients (respiratory function tests, blood tests) and ask them to complete a questionnaire (no travel required specifically for the study). in the event of a blood test prescribed and carried out in the department, the investigator will take an additional 2 ml, and perform a nasal and skin swab.

Eligibility criteria:
inclusion criteria: * absence of opposition from the legal representative of the patient and if possible from the patient himself. * patient with moderate to severe asthma at preschool or school age, previously included in samp cohort exclusion criteria: * patient included in another clinical study. * lack of coverage by social security.

Keywords: childhood severe asthma eosinophilic asthma allergic asthma asthma trajectories type 2 inflammation
biomarkers in patients at risk of developing myelodysplastic syndrome or other disorders and in healthy participants

Conditions: Leukemia; Myelodysplastic Syndromes

Summary: rationale: studying samples of blood and bone marrow in the laboratory from patients at risk of developing myelodysplastic syndrome may help doctors learn more about changes that occur in dna and identify biomarkers related to disorders of the blood and bone marrow. purpose: this research study is looking at biomarkers in patients at risk of developing myelodysplastic syndrome or other disorders and in healthy participants.

objectives: primary * to identify novel biomarkers of disease that would help in the initial diagnosis of myelodysplastic syndromes (mds). secondary * to understand the genesis of anemia in cancers. * to identify novel biomarkers of disease that predict progression of mds to acute myeloid leukemia. outline: blood and bone marrow samples are collected. hemopoietic stem cells (hsc) and progenitor cells are isolated from samples for analysis. some of these hsc and progenitor cells are used for functional assays. from the rest of the cells, dna, rna, and protein is extracted for molecular analyses, including gene mutation analysis, gene methylation assays, chromatin immunoprecipitation, microarray, and real-time polymerase chain reaction.

Eligibility criteria:
disease characteristics: * must meet 1 of the following criteria: * being investigated for a potential blood disorder due to abnormal blood count * patients with a known blood disorder who are having a bone marrow sample taken as part of the assessment of that disorder * patients undergoing hip replacement surgery at nuffield orthopaedic centre, oxford meeting the following criteria: * not on treatment likely to impair bone marrow function * no history of having had treatment likely to have impaired bone marrow function * normal blood count * archived samples from patients with known blood disorder patient characteristics: * see disease characteristics prior concurrent therapy: * see disease characteristics

Keywords: myelodysplastic syndromes acute myeloid leukemia
the telemark score: a reliable method for evaluation of results after breast surgery

Conditions: Breast Cancer

Summary: this paper will present a specific tool for evaluation of cosmetic results after breast conserving surgery (bcs) and secondary breast reconstruction with free diep-flap. introduction of a breast score system using digital photography seems to be a reliable tool for estimation of cosmetic results after breast surgery. the method has been employed on a specific group of 346 consecutive patients operated for breast cancer with breast conserving surgery. for the purpose of this study breast score system was tested on patients with free flap breast reconstruction (diep flap).

background: validated instruments for assessing results after breast surgery are sparse. investigators want to present a method used for the past 10 years at their institution for evaluation of the outcome after breast conserving surgery (bcs) and microsurgical breast reconstruction. methods: 346 consecutive patients subjected to bcs for cancer and 30 patients operated with a deep inferior epigastric flap (diep ) were assessed at least one year after the operation. the telemark breast score is a method based on standard two-dimensional photographs assessing the outcome after breast surgery in terms of volume, shape and symmetry. three different panels including plastic surgeons, breast surgeons and nurses were invited to test the telemark breast score. consistency of agreement between and inside the panel groups was studied results: inter- and intra observer reliability was acceptable. good stability of ratings could be shown in test-retests. conclusion: the telemark breast scale is inexpensive, statistically reliable and can be applied for quality control after breast surgery.

Eligibility criteria:
inclusion criteria: * patients operated for breast cancer at hospital of telemark exclusion criteria: * patients operated for breast cancer and not subjected for irradiation

Keywords: telemark score, reliability
proportional assist ventilation plus and estimation of respiratory effort during the transition to spontaneous ventilation

Conditions: Respiratory Effort; Proportional Assist Ventilation; Work of Breathing

Summary: in intensive care units, many critically ill patients need help from a machine called a ventilator to breathe. once these patients start to recover, doctors try to gradually reduce this support and help them breathe on their own again. however, not all patients are ready to be taken off the ventilator right away. during this transition, it's important to find the right amount of help-enough to support their breathing, but not so much that the machine does all the work for them. this study focuses on a special type of ventilator setting called proportional assist ventilation plus (pav+). unlike traditional modes, which give a fixed level of support, pav+ adjusts the amount of help it gives based on how hard the patient is trying to breathe. the more effort a patient makes, the more support the machine provides-and vice versa. this can make breathing feel more natural and may protect the lungs and breathing muscles during recovery. modern ventilators also display a measurement called "work of breathing," which tells how much effort the patient is using to breathe. this study wants to find out whether this measurement from the ventilator is a reliable way to monitor a patient's breathing effort, compared to other more invasive or complex methods. the research will include 20 adult patients who are recovering in the icu and have been on mechanical ventilation for more than 48 hours. all patients will have already met some criteria showing they're ready to begin breathing more on their own, but are not quite ready to have the breathing tube removed. each patient will go through different levels of pav+ support, and researchers will record how much effort they make to breathe using several methods, including special pressure sensors and data from the ventilator. the goal of the study is to better understand how to measure breathing effort safely and easily, and to improve how we support patients as they recover the ability to breathe on their own. if successful, this could help reduce complications and improve recovery for people on ventilators. there are no added risks or costs for the patients involved. all equipment used in the study is already part of regular icu care. participation requires informed consent and the privacy of all participants will be fully protected.


Eligibility criteria:
inclusion criteria: * adults (\>18 yrs) requiring invasive mv \>48 hrs * meeting spontaneous breathing transition criteria: * hemodynamic stability (ne \<0.1 μg/kg/min) * spontaneous breathing efforts * rass -2 to +1 * fio₂ \ 60mmhg with peep ≤10cmh₂o * pre-existing esophageal balloon * tolerates spontaneous modes \>5 mins * signed informed consent exclusion criteria: * meets extubation criteria * hemodynamic instability * psychomotor agitation (rass \>+1) * bronchopleural fistula * severe weakness (mrc \<36) * neuromuscular disease * pregnancy
study to evaluate the efficacy and safety of bevacizumab, and associated biomarkers, in combination with paclitaxel compared with paclitaxel plus placebo as first-line treatment of patients with her2-negative metastatic breast cancer

Conditions: Metastatic Breast Cancer

Summary: this is a phase iii, randomized, double-blind, placebo-controlled multicenter study to evaluate the efficacy and safety of bevacizumab administered in combination with paclitaxel in patients with previously untreated, locally recurrent, or metastatic her2-negative breast cancer. patients will be randomized to one of two treatment arms: bevacizumab or placebo. all patients will be given an intravenous (iv) infusion of of paclitaxel (90 mg/m2) for 3 weeks during each 28-day cycle. bevacizumab or placebo (10 mg/kg) will be administered by iv infusion on days 1 and 15 of each 28-day cycle. patients will be treated until disease progression, unacceptable toxicity or death from any cause occurs.


Eligibility criteria:
inclusion criteria: * histologically or cytologically confirmed, her2-negative adenocarcinoma of the breast, with measurable or non-measurable locally recurrent or metastatic disease. locally recurrent disease must not be amenable to resection with curative intent. * ecog performance status of 0 or 1 * for women of childbearing potential, use of an acceptable and effective method of non-hormonal contraception * for patients who have received recent radiotherapy, recovery prior to randomization from any significant acute toxicity, and radiation treatments have to be completed more than 3 weeks from randomization exclusion criteria: disease-specific exclusions: * her2-positive status * prior chemotherapy for locally recurrent or metastatic disease * prior hormonal therapy \< 2 weeks prior to randomization * prior adjuvant or neo-adjuvant chemotherapy is allowed, provided its conclusion has been for at least 12 months prior to randomization * investigational therapy within 28 days of randomization general medical exclusions: * life expectancy of \< 12 weeks * inadequate organ function * uncontrolled serious medical or psychiatric illness * active infection requiring intravenous (iv) antibiotics at screening * pregnancy or lactation * history of other malignancies within 5 years prior to screening, except for tumors with a negligible risk for metastasis or death