linjc16/ctgov huggingface dataset:
Marfan Syndrome and Quality of Life of Pediatric Patients

Study Overview
=================
Brief Summary
-----------------
The goal of this observational study is to learn about the impact of Marfan syndrome (MFS) in paediatric affected subjects. the main questions it aims to answer are: The assessment of quality of life in MFS Italian patients; The impact of phenotypic manifestations on self-image and self-management skills; Stratify patients according to the need of psychological support. Participants will take part in the study by completing four self-report questionnaires.

Detailed Description
-----------------
In literature, adolescents with MFS experience difficulty in connecting with peers, and are convinced that they would have been more physically attractive without the disease. Additionally, due to physical activity restrictions and orthopedic limitations, these patients reported having difficulty adjusting and participating in educational events. Data from present study will be able to support clinicians in identifying patients who need psychological support (through parental counseling interviews) aimed at increasing compliance with treatments and adaptation to the disease.

Official Title
-----------------
Marfan Syndrome: the Impact on the Quality of Life, Phenotypic Manifestations on Self-image and Self-management Skills, as an Index of Adaptation to the Disease in Pediatric Patients

Conditions
-----------------
Rare Diseases, Pediatric Disorder

Intervention / Treatment
-----------------
* Other: Questionnaire


Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Signed informed consent; MFS diagnosis according to Revised Ghent criteria (2010); Exclusion Criteria: Known cognitive deficits

Ages Eligible for Study
-----------------
Maximum Age: 18 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Intervention/Treatment |
| --- |
|Other: Questionnaire|KINDL-R; Morisky Medication Adherence Scale;|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Psychological counseling | Questionnaire to assess psychological support is KINDL-R (Quality of life); | 12 months | 
| Psychological counseling | Questionnaire to assess psychological support is Multidimensional Self Concept Scale (MSCS) | 12 months | 
| Psychological counseling | Questionnaire to assess psychological support is Morisky Medication Adherence Scale | 12 months | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
Quality of Life, Self-identification, Self-care
The Effect of Orthokeratography on the Quality of Life and Behavior of Myopic Children

Study Overview
=================
Brief Summary
-----------------
The study intended to observe the changes in the quality of life, behavior, and eye habits of children and adolescents aged 8-18 years before and after orthokeratology, as well as the differences in the quality of life and behaviors of different myopic groups after keratoplasty, using the EQ-5D-Y, CHU9D, and CHROME-G scales with the use of a self-assessment method.

Official Title
-----------------
The Effect of Orthokeratography on the Quality of Life and Behavior of Myopic Children

Conditions
-----------------
Myopia

Intervention / Treatment
-----------------
* Device: Orthokeratology


Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Spherical equivalent ranged -1.00D from-5.00D Optimal corrected visual acuity ≥1.0 in both eyes No apparent strabismus or other eye disease Able to read Chinese and communicate in Mandarin, able to understand the questions in the questionnaire Exclusion Criteria: A history of corneal surgery within 1 year Eyelid abnormalities or infection An inability to wear orthokeratology Use medications that affect the wear of eye and corneal contact lenses Those who have participated in a clinical trial of a drug within 90 days Allergic patients who have used contact lenses and/or care products The researchers consider it inappropriate to participate in this program

Ages Eligible for Study
-----------------
Minimum Age: 8 Years
Maximum Age: 18 Years

Sexes Eligible for Study
-----------------
All

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental Group<br>Subjects wore orthokeratology lenses | Device: Orthokeratology<br>* The experimental group wore orthokeratology lenses<br>|
| Control group<br>Subjects wore single-vision glasses group | |

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Changes in EuroQol five dimensions questionnaire(EQ-5D-Y) score | The health utility can be calculated by the number of the answer to the question. 0 means death and 1means complete health. | The change was the difference between each two follow-up times, including before and one day, one week, one month and three months after orthokeratology | 
| Changes in the Child Health Utility 9D (CHU9D) score | The health utility can be calculated by the number of the answer to the question. 0 means death and 1means complete health. | The change was the difference between each two follow-up times, including before and one day, one week, one month and three months after orthokeratology |
Assesment of Lactulose vs Lactobacillus Acidophilus Effect in CKD Patients

Study Overview
=================
Brief Summary
-----------------
Assessment for usage of laxatives and probiotics ,and its role in improving uremic parameters of CKD as GFR, UREA ,CREATININE, CLINICAL and UREMIC assessment (lower limb edema ,UOP,base of chest ,vomiting ,dyspnea,blood pressure measurement)

Detailed Description
-----------------
with advanced CKD stages ,also have been linked to the high prevalence of constipation in CKD,Lactulose is a synthetic disaccharide.Lactulose is poorly absorbed from the gastrointestinal tract remains virtually unchanged and is then fermented by gut microbiota that increase osmotic effects and intraluminal gas formation . lactulose reduces the nitrogen products and urea, creatinine, uric acid, and b2- microglobulin levels. Lactulose also suppress tubulointerstitial fibrosis in a rat model of a kidney disease study . Lactulose modifies the gut microbiota, increasing the abundance of Bifidobacteria and Lactobacilli after 8 weeks of 30 ml lactulose syrup thrice daily, and ameliorates CKD progression by suppressing uremic toxin production .probiotics include vast array of products with living organisms whose purpose is to improve intestinal microbial balance and produce beneficial effect on ones health .probiotics is an alternative therapy for patients with CKD

Official Title
-----------------
Assesment of Lactulose vs Lactobacillus Acidophilus Effect in CKD Patients

Conditions
-----------------
CKD

Intervention / Treatment
-----------------
* Drug: Lactulose


Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: CKD stages 3,4,5 with non-dialysis receiving a diagnosis of constipation DM nephropathy Exclusion Criteria: IBS (ulcerative colitis -crohns) HCV ,HBV , autoimmune patients, malignancy pt cirrhotic patients haemodialysis patients cardiovascular patients abdominal surgery, gut obstruction, pregnancy, patients with ESRD on dialysis, history of lactulose allergy.

Ages Eligible for Study
-----------------
Minimum Age: 18 Years
Maximum Age: 60 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Intervention/Treatment |
| --- |
|Drug: Lactulose|lactulose and lactobacillus acidophilus on ckd patients|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Assessment for usage of laxatives and probiotics ,and its role in improving uremic parameters in CKD patients and compare between both. | Assessment for usage of laxatives and probiotics ,and its role in improving uremic parameters in CKD patients and compare between both. | 1 year |
The Long Non Coding MALAT1 as a Potential Salivary Diagnostic Biomarker in Oral Squamous Cell Carcinoma Through Targeting mi RNA 124

Study Overview
=================
Brief Summary
-----------------
Objective: is to determine the diagnostic accuracy of lncRNA MALAT1 as a potential salivary biomarker of OSCC as well as assessment of the salivary expression level of miRNA 124 which is targeted by MALAT1. Materials and Methods: Saliva Samples were collected for the quantitative determination of salivary MALAT1 and mi RNA -124 using quantitative Real-time Polymerase Chain Reaction technique for the two study groups, Group A: 20 patients with a diagnosis suggestive of OSCC and Group B: 20 age-and-sex-matched healthy individuals, as normal controls.

Detailed Description
-----------------
Materials and Methods: Saliva Samples were collected for the quantitative determination of salivary MALAT1 and mi RNA -124 using quantitative Real-time Polymerase Chain Reaction technique for the two study groups, Group A: 20 patients with a diagnosis suggestive of OSCC and Group B: 20 age-and-sex-matched healthy individuals, as normal controls.

Official Title
-----------------
The Long Non Coding MALAT1 as a Potential Salivary Diagnostic Biomarker in Oral Squamous Cell Carcinoma Through Targeting mi RNA 124

Conditions
-----------------
Oral Squamous Cell Carcinoma

Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: The study included patients with OSCC and healthy controls of both sexes. Exclusion Criteria: Patients having systemic diseases such as; liver diseases, cardiovascular disease, nervous system, pulmonary, renal, endocrine, gastrointestinal disorders, or other types of cancer were excluded.

Ages Eligible for Study
-----------------
Minimum Age: 20 Years
Maximum Age: 65 Years

Sexes Eligible for Study
-----------------
All

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Group A<br>20 patients with a diagnosis suggestive of OSCC | |
| Group B<br>20 age-and-sex-matched healthy individuals, as normal controls. | |

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| quantitative determination of salivary non-coding RNAs MALAT1 | quantitative determination of salivary non-coding RNAs MALAT1 using quantitative Real-time Polymerase Chain Reaction technique (qRT-PCR) in the whole unstimulated saliva | 2 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| quantitative determination of salivary mi RNA -124 | quantitative determination of salivary mi RNA -124 using quantitative Real-time Polymerase Chain Reaction technique (qRT-PCR) in the whole unstimulated saliva | 2 months | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
Long non coding RNA, Oral squamous cell carcinoma, Micro RNA, Salivary biomarkers, MALAT1, Oral cancer biomarkers
Study on Hypertension and Frailty in the Older People

Study Overview
=================
Brief Summary
-----------------
To estimate the linear association between daytime systolic blood pressure variability evaluated as standard deviation (SD) and frailty evaluated as Frailty index according to the Rockwood's accumulation of deficits model

Official Title
-----------------
Study on Hypertension and Frailty in the Older People: the HYPER-FRAIL Study

Conditions
-----------------
Frailty, High Blood Pressure

Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Diagnosis of hypertension according to the criteria of the European Society of Cardiology guidelines Consent of the patient (or legal representative) to participate in the study Exclusion Criteria: Refusal of the patient or his/her legal representative Life expectancy of less than 6 months

Ages Eligible for Study
-----------------
Minimum Age: 75 Years

Sexes Eligible for Study
-----------------
All

Study Plan
=================
How is the study designed?
-----------------
What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Daytime systolic blood pressure variability | Standard deviation of daytime systolic blood pressure | At baseline | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Nighttime systolic blood pressure variability | Standard deviation of nighttime systolic blood pressure | At baseline | 
| 24h systolic blood pressure variability | Standard deviation of 24h systolic blood pressure | At baseline |
An Evaluation of the Implementation of the Care and Monitoring at Home Program- A New Paradigm for Acute Care Management of Cancer Patients

Study Overview
=================
Brief Summary
-----------------
To understand the experience of patients receiving care in the Care and Monitoring at Home program at MD Anderson. Researchers intend to use this information to study and possibly improve the hospital care at home program.

Detailed Description
-----------------
OBJECTIVES Primary Objectives The objective of this observational study is to assess the feasibility of providing hospital substitution hospital level care in the home for patients with cancer through the CaMH Program. Our primary gauge of feasibility will be a care escalation rate of <20%, defined as the proportion of patients who initiate care in our HaH program but are transferred back to the inpatient setting to complete the care episode. This threshold is consistent with the published literature.15 In addition, a feasible designation will require a median score > 3 on each of three post-discharge survey implementation measures - the Feasibility of Implementation Measure, Acceptability of Implementation Measure, and Intervention Appropriateness Measure. Secondary Objectives Secondary objectives will include patient experience and perception about CaMH, length of stay, rate of clinical adverse events during CaMH (falls, pressure ulcers, medication errors) and 30-days after discharge, 7-day readmission, 30-day readmission, and 30-day emergency department visit rate. (Note, the aforementioned adverse events could occur as a result of participation in CaMH. However, minimal adverse events are expected a result of participation in this observational study (see adverse events below)). A patient will be considered to have an ER visit or hospital readmission if these events are documented in the medical record OR the patient reports the event on the survey.

Official Title
-----------------
An Evaluation of the Implementation of the Care and Monitoring at Home Program- A New Paradigm for Acute Care Management of Cancer Patients

Conditions
-----------------
Cancer

Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Participants will be eligible for enrollment in this study if they have accepted enrollment in CaMH. No patients will be excluded if they are enrolled in CaMH. Cognitively impaired adults will be able to participate in the study if an adults proxy provides informed consent and completes survey materials on their behalf. Exclusion Criteria: - Children and pregnant women will not be enrolled in the CaMH program, and therefore not eligible for this study.

Ages Eligible for Study
-----------------
Minimum Age: 18 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------
What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of Life questionnaires (QOL) |  | through study completion; an average of 1 year |
Patient-Centered Care Survey

Study Overview
=================
Brief Summary
-----------------
The key to patient-centered care is to identify what the patient perceives as meaningful. The primary objective of this research is to evaluate which aspects of patient-centered care are priorities to infertility patients, and if those priorities vary by geographical region.

Detailed Description
-----------------
An electronic survey will be distributed to current patients within The Prelude Network, a network of fertility practices, for a total of six months. Survey responses will be collected anonymously using Survey Monkey. The survey is designed to collect information on patient preferences for patient-centered care. Participants will rank the importance of the different options within each Factor category (Clinic, Physician, Finance, and Staff). In addition, demographic questions are included and will be utilized to determine if these factors could have a significant impact on patient-centered care preferences. It is anticipated that at least 1,000 completed surveys will be collected. A similar survey was distributed to Prelude Network physicians. Patient and physician responses may be compared as part of additional data analysis.

Official Title
-----------------
Patient-Centered Care Survey of Infertility Patients

Conditions
-----------------
Infertility

Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Study participants must be a current patient within The Prelude Network (a network of fertility clinics) who has had any type of visit at a participating clinic within the last 6 months of the date of study initiation. Exclusion Criteria: Not a current patient at a participating clinic.
Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Current Patients<br>Current patient is defined as any patient who has had any type of visit at a participating clinic within the last 6 months of the date of study initiation. | |

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Comparative Analysis | Comparative analysis will be conducted. Specifically, the importance of each factor of the Survey Questionnaire data will be analyzed descriptively by summing the ranks given by the patients. Analyses will also be performed by subgroups of patients based on race/ethnicity and other demographic characteristics. | 6 months | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
Patient-centered care, Patient experience
Laser Speckle Imaging in Ischaemic Tissue Loss

Study Overview
=================
Brief Summary
-----------------
Peripheral arterial disease is a condition in which the arteries become narrowed due to a build up of cholesterol, as a result, blood cannot flow efficiently through the arteries and this can compromise the parts of the body supplied by these arteries. In its most severe form, peripheral arterial disease can lead to decomposition of tissues in the feet, leading to ulcers or gangrene. Patients with peripheral arterial disease undergo procedures to improve blood flow. However, there are often multiple arteries to treat and each intervention carries risk. It therefore can be difficult to judge how much treatment is sufficient to promote healing. Laser Speckle Imaging is a technique used to demonstrate blood flow in the skin. It is hoped that changes in skin blood flow, as measured by LSI, immediately after a procedure to improve blood flow, may help in the decision making as to whether further intervention is necessary. An LSI scan will be performed before a procedure for tissue loss and immediately after it is performed. The patient's clinical records will then be checked to see whether the wound has improved and whether the difference in LSI scans correlated with this.

Official Title
-----------------
The Use of Laser Speckle Imaging in the Evaluation of Successful Revascularisation of Patients With Ischemic Tissue Loss

Conditions
-----------------
Vascular Diseases

Intervention / Treatment
-----------------
* Other: Device to view the skin


Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Patients with diabetes Patients with a foot ulcer or open wound Patients aged over 18 Patients able to given consent Patients undergoing femoropopliteal bypass or superficial femoral / popliteal artery angioplasty Exclusion Criteria: nability to consent Planned major limb amputation for the affected limb

Ages Eligible for Study
-----------------
Minimum Age: 18 Years
Maximum Age: 100 Years

Sexes Eligible for Study
-----------------
All

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Patients with diabetes and wound ulcers<br> | Other: Device to view the skin<br>* Application of device to help view the wound area better<br>|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| fail to heal wounds | The study aims to assess whether wounds which fail to heal are associated with small differences in LSI blood flow measurements. | 7 months |