Kornimate/medical-research-clean huggingface dataset:
a longitudinal, observational study of primary ciliary dyskinesia in adults

Conditions: Primary Ciliary Dyskinesia

Summary: the goal of this observational study is to characterize clinical measures and biomarkers of airway disease in adults with primary ciliary dyskinesia (pcd) and in a group of healthy volunteers (hv) to establish normative values. lung function, mucociliary clearance, radiological findings, and clinical findings will be assessed. furthermore, quality of life will be assessed using qol-pcd, a disease specific questionnaire.

primary ciliary dyskinesia (pcd) is a rare, genetically heterogeneous disease characterized by progressive upper and lower respiratory tract infections and inflammation caused by impaired mucociliary clearance (mcc). while longitudinal studies of children and adolescents with pcd have informed the early natural history of lung disease, there remains a knowledge gap in disease characteristics and progression in adults. there are no prospective published data evaluating the natural history of airway morbidity and mortality in adults, and little is known about the optimal clinical measures and biomarkers to evaluate disease progression. cohort studies are needed to understand clinical measures and biomarkers across the lifespan of people with pcd, distinguish disease subtypes, and define endpoint variability. natural history studies are critical for designing future clinical trials. new therapies have lagged in part due to lack of clear clinical biomarkers for adults. the overarching goal is to characterize clinical measures and biomarkers of airway disease in adults with pcd. in addition, a subset of these clinical measures and biomarkers will be collected in a group of healthy volunteers (hv) to establish normative values.

Eligibility criteria:
inclusion criteria: * pcd diagnosis with confirmation of 2 identified pathogenic genetic variants within 1 of the following ultrastructure variants: * dnai1 oda defect * other oda defect * ida - mtd defect * rs defect * informed consent exclusion criteria: * are a current smoker (e-cigarette, tobacco, or marijuana) * are a former smoker who discontinued smoking \<1 year prior to enrollment or has a cumulative 1+ pack-year smoking history * have a recent stable forced expiratory volume in one second (fev1) \<35% predicted * have contraindications for mri studies (implanted devices/materials; inability to tolerate; claustrophobia or severe anxiety that would preclude mri/imaging) * have had a significant clinical radiation exposure (as determined by the investigator) within the past 6 months. potential participants who have had a chest ct within the past 6 months may be eligible to be enrolled and their clinical ct will be utilized as the baseline for this study * are pregnant or breastfeeding * have any comorbidities likely to impact lung function (e.g., complex congenital heart disease, severe scoliosis, diseases involving immune dysregulation, lung transplantation, lung lobectomy, end-stage renal disease, or poor overall health status).

Keywords: pcd primary ciliary dyskinesia kartagener syndrome
effect of hysteroscopic metroplasty on reproductive outcome in patients with rif

Conditions: Recurrent Implantation Failure; T-Shaped Uterus

Summary: in recent years with the continuous improvement of art technology, it has brought new hope to infertile couples, however more than half of the patients still experience multiple transfer failures. abnormalities in the structure of the uterine cavity are one of the main factors that lead to the failure of embryo implantation. hysteroscopic metroplasty with cold scissors is an innovative technique of our team, in which micro-scissors are used in the procedure instead of the previous electric knife. our previous study found that this technique has the effect of improving fertility outcomes in patients with t-shaped uterus. based on the previous study, this study is an open randomized controlled trial to include patients with more than 2 or more art implantation failures. for the first time, cold knife hysteroscopic hysterectomy was used to treat patients with cryptic uterine stenosis in patients with repeated rif implantation failures to assess the clinical efficacy of the technique and to investigate the effect of this technique on the pregnancy outcome of reimplantation of embryos in patients with repeated art implantation failures. meanwhile, this project is the first to study the diagnostic value of transvaginal 3d ultrasound/mri for the assessment of uterine cavity status in patients with rif, with a view to exploring the value of noninvasive imaging as an alternative to invasive hysteroscopy in the clinical management of rif. the aim of the study is to provide a reference for early diagnosis and treatment of patients with repeated art implantation failures, and to improve the pregnancy outcome of their reimplanted embryos.


Eligibility criteria:
inclusion criteria: * at least twice previous implantation failures * willing to receive further embryo transfer exclusion criteria: * sturctural intrauterine lesions * severe adenomyosis * premature ovarian failure * bmi \> 35 kg/m\^2 * severe systemic disease or maligant tumor

Keywords: hysteroscopic metroplasty with cold scissiors female infertility recurrent implantation failure reproductive outcome
study if the presence of functional fceri/rii on the surface of human blood platelet

Conditions: Allergy

Summary: anaphylactic shock is the most severe expression of immediate hypersensitivity reactions. the mechanisms leading to these reactions are still poorly understood and may involve platelets, especially in the most severe forms. the ige ( immunoglobulinee)-mediated mechanism, involving the fceri(the high-affinity receptor for the fc region of immunoglobulin e (ige) receptor present on the surface of mast cells and basophilic cells, is the most common mechanism. the receptors fceri and fcerii are also described as being present on the surface of blood platelets, which would imply their activation along with the other cells involved. however, studies showing the presence of the fceri/rii receptors on blood platelets suffer from many biases. the main objective of the research is to study whether the fceri/rii receptors are present and functional on the surface of blood platelets from allergic patients.


Eligibility criteria:
inclusion criteria: * age \> 18 years-old * with a protein/drug allergy (hymenoptera, arachide, amoxicillin) * confirmed by skin tests and/or challenge test * with specific iges exclusion criteria: * patients who refuse to participate to this study * patients unable to consent
legionnaires' effect on smell

Conditions: Legionnaires' Disease

Summary: the goal of this study is to determine whether survivors of legionnaires' disease suffer smell loss. a quantitative olfactory test will be performed by the participants. such testing will require approximately 20-30 minutes of the participant's time. the participants will take the university of pennsylvania smell identification test (upsit), a scratch-and-sniff test to assess their ability to identify odors in a forced- choice format. volunteers will also complete a questionnaire asking personal history, demographic questions, and medical history.


Eligibility criteria:
inclusion criteria: * persons of generally good health, as obtained from a screening questionnaire who are 18 years of age and older * both men and women of all ethnic backgrounds will be accepted. exclusion criteria: * age less than 18 * pregnant women * persons who mental competence is limited, such as those with dementia
the sincere intervention to address covid-19 health disparities

Conditions: COVID-19; Vulnerable Populations; Social Determinants of Health

Summary: the goal of this real world efficacy study is to understand the benefit of universal social needs screening, community-based service referrals, and telephonic follow-up as a scalable strategy for preventing covid-19 transmission, and for addressing the secondary health effects of the social, behavioral, and economic changes following the covid-19 pandemic. with statewide community service providers, existing health information technology, and piloted methods, we seek to determine the effectiveness of universal social needs screening and community service referrals - the sincere intervention - in improving health outcomes of covid-19 vulnerable and socioeconomically disadvantaged populations and whether intensive follow-up and collaborative goal-setting helps overcome barriers to community service use by patients seen in the emergency department and seeking covid testing at community-based and mobile clinic locations.


Eligibility criteria:
inclusion criteria: * adult (\> 17 years) * english or spanish speaking * completed the referral process at the uhealth ed, one of the covid-19 testing sites or the primary children's ed and indicated both social needs and willingness to receive service low- and no-cost referrals from the united way 211 community referral service * able to be reached by phone during the intervention or able to complete surveys sent by text or email exclusion criteria: * those unable to communicate verbally * those living in nursing facilities, or those who are not otherwise responsible for self-care
650nm low-level red-light for myopia control and prevention in children

Conditions: Myopia

Summary: a multicenter randomized controlled trial, evaluating the efficacy and safety of 650nm low-level red-light irradiation for myopia control and prevention in children. participants included children(aged 6 to 12 years, spherical equivalent error of 0.5d or below) who are already myopic at recruitment, and those who are of emmetropia or low hyperopia.

this multicenter randomized controlled trial will be conducted in three hospitals: beijing tongren hospital, and another two subcenters. the whole study will last for five years.the investigators will perform data analysis at 6 months follow-up, one-year follow-up, two-year follow-up, three-year follow-up, four-year follow-up and the end of the study. the intervention measure used will be 650 nm low-level red-light. this kind of intervention will be integrated into a headworn device. this device could be used for treatment of myopia or amblyopia, and is safe for the eyes and has been verified by the chinese market supervision and administration department.

Eligibility criteria:
inclusion criteria: * children aged 6 to 12 years * the cycloplegic spherical equivalent error (ser) is -6d to 1d (\> -6d, ≤1d) in both eyes * astigmatism of 2.5 d or less (≤2.5d) * willing to participate in the study and sign the informed consent form exclusion criteria: * using other myopia interventions or stopped using them for less than three months, including but not limited to atropine eye drops or orthokeratology lens * with anisometropia (difference in sphere between two eyes was 1.5d or greater), strabismus, or amblyopia * with refractive media opacification (keratopathy, lens opacity, etc.) * allergy to cycloplegia drugs
carboxyamidotriazole in treating patients with metastatic kidney cancer

Conditions: Recurrent Renal Cell Cancer; Stage IV Renal Cell Cancer

Summary: randomized phase ii trial to study the effectiveness of carboxyamidotriazole in treating patients who have metastatic kidney cancer. carboxyamidotriazole may stop the growth of kidney cancer by stopping blood flow to the tumor

objectives: i. determine the toxicity and disease-stabilizing effect of carboxyamidotriazole in patients with metastatic renal cell carcinoma. ii. determine the objective response rate in patients treated with this drug. outline: this is a randomized, double-blind, multicenter study. patients are stratified according to time from diagnosis of metastatic disease to study entry (fewer than 24 months vs 24 months or more). patients receive oral carboxyamidotriazole (cai) daily for 4 weeks. treatment repeats for 4 courses in the absence of disease progression or unacceptable toxicity. after 4 courses, patients experiencing complete or partial response continue treatment until disease progression or unacceptable toxicity. patients with stable disease are randomized to one of two treatment arms. arm i: patients receive oral cai as above. arm ii: patients receive a placebo. treatment repeats every 4 weeks for at least 4 courses in the absence of disease progression or unacceptable toxicity. patients experiencing disease progression are unblinded and those on placebo begin oral cai as above. patients are followed every 6 months. projected accrual: a maximum of 335 patients will be accrued for this study within 15-25 months.

Eligibility criteria:
inclusion criteria: * histologically confirmed renal cell carcinoma * metastatic or unresectable disease * documented disease progression, even after nephrectomy * at least 1 unidimensionally measurable lesion * at least 20 mm by conventional techniques * at least 10 mm by spiral ct scan * the following lesions are not considered measurable: * bone lesions * leptomeningeal disease * ascites * pleural/pericardial effusion * abdominal masses not confirmed and followed by imaging * cystic lesions * performance status - ctc 0-2 * wbc at least 2,000/mm\^3 * platelet count at least 75,000/mm\^3 * bilirubin no greater than upper limit of normal (uln) * ast no greater than 2.5 times uln * creatinine no greater than 2.0 mg/dl * not pregnant or nursing * fertile patients must use effective contraception * no baseline neuropathy or cerebellar dysfunction greater than grade 1 * at least 4 weeks since prior immunotherapy * no prior carboxyamidotriazole * no concurrent filgrastim (g-csf) or sargramostim (gm-csf) * concurrent epoetin alfa allowed * at least 4 weeks since prior chemotherapy * no concurrent chemotherapy * no concurrent hormonal therapy except steroids for adrenal failure or hormones for conditions not related to disease (e.g., insulin for diabetes) * at least 4 weeks since prior radiotherapy * no concurrent palliative radiotherapy * see disease characteristics * at least 4 weeks since prior surgery
social support intervention for older adults with t2dm

Conditions: Type 2 Diabetes

Summary: this study seeks to describe and evaluate the impact of social support on self-care and clinical outcomes in rural-dwelling older adults with t2dm, test the feasibility and preliminary effectiveness of a 6-week intervention administered by community health workers targeting rural dwelling older adults with t2dm (seed) and an individual within their social support network (alter).

a mixed-methods approach will be used to map social networks of older adults and assess their perceived social support from members of their social network and determine its influence on self-care and clinical outcomes. we will conduct semi-structured interviews with older rural-dwelling adults to map their social network structure, determine the types of social support provided by members of their sn, and identify key players within the older adults' personal network. for this aim, key players are those who can facilitate and promote t2dm self-care on an individual level. these older adults will form a dyad with their alter to participate in a multilevel intervention which includes: gauging the feasibility of using community health workers identified via social network analysis to conduct self-care sessions in rural communities, and the feasibility of seed-alter dyads to provide social support that improves self-care in older adults. in addition, the seed-alter dyad will participate in 6 weekly sessions of a diabetes education program, led by the community health workers identified previously. participants will be asked to complete surveys at baseline, 6, and 12 months to assess social support, participants' knowledge about diabetes, and how participants are managing their diabetes. the preliminary data used for this k01 application was collected from the brfss where data is self-reported and its accuracy cannot be confirmed, and a dataset where social support was not the primary objective of the study and there was a small sample size all older adults. yet, there remains a body of literature that substantiates the influence of social support on t2dm self-care and the disproportionate burden of t2dm in older adults. the proposed research will provide a comprehensive overview of the role of social support and how to leverage this support in a rural community.

Eligibility criteria:
"seeds" inclusion criteria: * confirmed diagnosis of t2dm via electronic medical record * age 65 years or older * lives within leslie county * able to provide consent * have had at least one clinic visit in the past year "seeds" exclusion criteria: * no diagnosis of t2dm via electronic medical record * under 65 years of age * unable to speak and understand english * unable to consent "alters" inclusion criteria * 18 years of age or older * able to provide consent * has at least weekly contact with the seed "alters" exclusion criteria * under 18 years of age * unable to speak and understand english * unable to consent
a study on rituximab (mabthera) in participants with chronic lymphocytic leukemia (cll)

Conditions: Lymphocytic Leukemia, Chronic

Summary: this observational study will assess the therapeutic efficiency, treatment schedules, handling procedures, and the safety profile of rituximab in routine care in participants with cll.


Eligibility criteria:
inclusion criteria: * cll requiring treatment * participants receiving a chemotherapy in combination with rituximab (decision taken by doctor prior to and independent from inclusion in this non-interventional study) * after this trial started, an amendment to the study protocol was introduced, adding a further inclusion criterion: comorbidities according to cumulative illness rating scale (cirs) score greater than (\>) 6 and/or creatinine clearance less than (\<) 70 milliliters per minute (ml/min) exclusion criteria: * participants with contraindication to rituximab treatment
observational study of the interaction between hepatitis c virus infection and pregnancy

Conditions: Hepacivirus; Pregnancy

Summary: the goal of this observational study is to learn about he effects of hepatitis c virus on pregnancy. the main question\[s\] it aims to answer are: effect of hepatitis c virus on liver function in pregnant women mother-to-child transmission rate in pregnant women with hepatitis c

this study aims to collect demographic data, biochemical indicators during pregnancy, pregnancy complications, and fetal outcomes through the hospital his and lis systems to investigate the impact of hcv infection on pregnancy outcomes, mother-to-child transmission, and long-term child development, and to provide assistance in the clinical management of pregnant women with hcv infection.

Eligibility criteria:
inclusion criteria: * normal (anti-hcv negative) or rna negative (anti-hcv positive and hcv rna negative) or rna positive (anti-hcv positive and hcv rna positive) pregnant women * pregnant women aged 20-45 years * complete pregnancy data available exclusion criteria: * combination of other liver diseases such as viral hepatitis (hepatitis a, b, d, e), alcoholic hepatitis, autoimmune hepatitis, metabolic hepatitis, non-alcoholic fatty liver disease * combination of other viral infections with potential loss of liver function * mental illness * patients with immunosuppression * mother with cirrhosis or liver tumour
exercise and systemic lupus erythematosus

Conditions: Systemic Lupus Erythematosus

Summary: the investigators hypothesize that a three-month aerobic exercise training program will positively affect the lipid profile, insulin sensitivity , cytokine profile, the cardiovascular parameters and muscle strength in sle patients.


Eligibility criteria:
inclusion criteria: * age between 7 and 40 years * sledai ≤ 4 exclusion criteria: * cardiovascular dysfunction * rhythm and conduction disorders * musculoskeletal disturbances * kidney and pulmonary involvements * peripheral neuropathy * use of tobacco * treatment with lipid-lowering or hypoglycemic drugs * fibromyalgia * use of chronotropic or antihypertensive drugs * physically active subjects
scheduled telephone intervention for individuals with spinal cord injury and their families

Conditions: Spinal Cord Injury

Summary: the purpose of this study is to evaluate whether scheduled telephone intervention with individuals with spinal cord injury (sci) and their caregivers in the first year following discharge from acute inpatient rehabilitation will reduce rehospitalizations and emergency room visits as well as improve adjustment to sci.

this project is a two-group randomized control trial. the control group will receive usual care given to all patients being discharged from acute inpatient rehabilitation following sci. at 6 months and one year post injury an examiner blinded to group status will contact control group participants to collect outcome data. the telephone intervention group (treatment group) will also receive their usual care following discharge and a welcome letter, which will include the same information as the control group, but also remind them of the up-coming telephone call schedule. treatment group participants and their significant others will be contacted by telephone within 24 to 48 hours after discharge and 10 additional times at weeks 1, 2, 4, 6, and months 2, 3, 4, 6, 8, and 10. the frequent early telephone contacts are meant to address early concerns that frequently arise after discharge are expected to last between 30 and 45 minutes. later phone calls may be brief if no concerns are raised and are expected to address resource needs as well as ongoing questions that arise through the first year after injury. content of each phone call will be dependent on issues raised by each individual participant and their significant other and/or follow-up on concerns raised in prior phone contacts rather than a specific structured interview. treatment group participants will also be contacted at 6 months and one year post injury by the examiner blinded to group status to collect outcome data.

Eligibility criteria:
inclusion criteria: * new traumatic sci * inpatient acute rehabilitation at the sci system hospital * residence in the catchment area at the time of injury exclusion criteria: * lack of a telephone * non-english speaking * severe psychiatric condition such as psychosis

Keywords: spinal cord injury
prp in intracytoplasmic sperm injection

Conditions: Infertility

Summary: infertility is a major problem nowadays

ovarian and uterine factor of infertility are very hard to treat

Eligibility criteria:
inclusion criteria: * women with primary infertility exclusion criteria: * women with unexplained infertility
diet and disease activity in patients with inflammatory bowel disease

Conditions: Inflammatory Bowel Disease

Summary: in addition to a genetic susceptibility, the immune system and the intestinal microbiota, diet is hypothesized to be an important factor in the onset and progression of inflammatory bowel diseases (ibd). further insight in factors affecting disease activity may contribute to targeted interventions improving disease burden and healthcare costs for these patients. however, well-designed studies exploring the role of diet in the development of exacerbations are hardly available. the investigators hypothesize that differences in dietary patterns affects the intestinal microbiota composition and thereby contributes to the development of exacerbations in ibd. furthermore, a subgroup of patients suffers from malnutrition, although the exact prevalence is unknown since simple noninvasive screening tools have not been validated for ibd. the investigators hypothesize that malnutrition is frequently present in ibd patients and associated with dietary intake and disease characteristics.


Eligibility criteria:
inclusion criteria: * ibd patients, diagnosis based on clinical, endoscopic, histological and/or radiological criteria * participating ibd-sl cohort exclusion criteria: * unable to provide informed consent