Heart and Blood Diseases

All Conditions

Nervous System Diseases

Behaviors and Mental Disorders

Respiratory Tract (Lung and Bronchial) Diseases

Symptoms and General Pathology

Digestive System Diseases

Urinary Tract, Sexual Organs, and Pregnancy Conditions

Diseases and Abnormalities at or Before Birth

Rare Diseases

Heart Failure

Stroke

Alzheimer Disease

Lung Diseases

Pulmonary Disease, Chronic Obstructive

Liver Diseases

Kidney Failure, Chronic

Renal Insufficiency

Liver Cirrhosis

Fibrosis

Cystic Fibrosis

Pulmonary Fibrosis

Acute Kidney Injury

Late Onset Disorders

Dementia

Brain Diseases

Central Nervous System Diseases

Tauopathies

Neurodegenerative Diseases

Neurocognitive Disorders

Mental Disorders

Psychotic Disorders

Respiratory Tract Diseases

Pancreatic Diseases

Gastrointestinal Diseases

Genetic Diseases, Inborn

Infant, Newborn, Diseases

Chronic Disease

Disease Attributes

Lung Diseases, Obstructive

Kidney Diseases

Urologic Diseases

Urogenital Diseases

Female Urogenital Diseases

Pregnancy Complications

Female Urogenital Diseases and Pregnancy Complications

Male Urogenital Diseases

Renal Insufficiency, Chronic

Lung Diseases, Interstitial

Chronic Graft Versus Host Disease

Familial Alzheimer Disease

Acute Graft Versus Host Disease

Methods of collecting cases The subjects whose identity card numbers last in odd numbers are in the experimental group and even numbers are in the control group. They are randomly divided into two groups - the shared mode intervention group (experimental group) and the home care routine care group (control group). The experimental group was given a weekly sharing mode intervention for six weeks, 20-60 minutes per week; the control group was given the home health education manual in the third week.

A health education manual based on a shared model

Health Education Manual

manual

WEN-SHIOU PAN

Since September 1st, 2009, Taiwan has begun to pay attention to the care of patients with organ failure, dementia and the elderly, and brought eight of non-cancer terminal patients into health insurance subsidies to implement the goal of universal palliative care and local aging. Taiwan has entered the aged society since March 2018, become the heavy burden of expenditure in Taiwan because of the health care needs and costs associated with the rapid aging of the population. With advanced medical technology, when facing inevitable death situation, should not use too much medical treatment on terminally ill patients. The waste of medical resources and bring both patients and family members so much pain. In Taiwan, people have misconception about tranquil palliative care. The low rate of home palliative care for non-terminal cancer patients. The purpose of this study is investigating the eight non-cancer terminal caregivers' knowledge, attitudes and service intentions of palliative care, and getting the result by research intervention.

In this study, a randomized experimental research design was applied by two-group pre-and post-test. The targets are the eight non-cancer terminal caregivers in a home care institution of a regional teaching hospital located in Yilan. Targets' ID end with odd numbers are in experimental group received shared mode intervention, and even numbers are in control group received home routine care. The experimental group was implementing measures of weekly shared mode intervention in 20 to 60 minutes for six weeks; the control group started to implement measures of home care medical instructions booklet in the third week. The content of the outcome measurement questionnaire includes: basic information of the eight non-cancer terminal caregivers, the palliative care knowledge scale, the palliative care attitude scale, and palliative care service initiation intention scale. Data were analyzed by statistical methods such as descriptive analysis, independent sample t-test, paired-samples t-test, Pearson correlation analysis and one-way ANOVA.

The valid sample of this study consisted of 60 individuals, 31 females and 29 males, with a mean age of 56.3 years, and one attrition (death), with an attrition rate of 1.67%. The results showed that (1) there was a significant difference between the experimental group and the control group in the mean pre-test and post-test of hospice and palliative care knowledge (t=-4.973, p=0.00) and palliative attitude (t=-2.424, p=0.02). (2) There were significant differences in the pre-test and post-tests of hospice and palliative care knowledge (p=0.000), hospice and palliative care attitude (p=0.008), and hospice and palliative care intention (p=0.009) in the experimental group; there were significant differences in the pre-test and post-tests of hospice and palliative care knowledge in the control group (p=0.002). (3) There were significant differences in hospice knowledge, attitude, intention and hospice initiation between subjects in the experimental group with and without a signed DNR or ACP, indicating that those with a signed DNR or ACP had higher scores in hospice knowledge, attitude, intention and hospice initiation, which was a significant factor in the results of this study; there were significant differences in hospice knowledge and intention between the control group in terms of education level. This means that higher education level, higher score of hospice knowledge and intention. (4) After the shared model study intervention, 24 (72.7%) signed the DNR or ACP consent form and 16 (48.5%) initiated hospice services; after the home care routine care, 3 (11.1%) signed the DNR or ACP consent form and 0 (0%) initiated hospice services.

Explore the Sharing Model Intervene to Improve the Knowledge, Attitudes, Service Intentions and Service Start-up Effects of the Eight Major Non-cancer Disease End-stage Caregivers on Well-being and Palliative Care

National Taipei University of Nursing and Health Sciences

The content of the outcome measurement questionnaire includes: basic information of the eight non-cancer terminal caregivers, the palliative care knowledge scale, the palliative care attitude scale, and palliative care service initiation intention scale. Data were analyzed by statistical methods such as descriptive analysis, independent sample t-test, paired-samples t-test, Pearson correlation analysis and one-way ANOVA.

Wen-Shiou Pan

Nutritional and Metabolic Diseases

Gland and Hormone Related Diseases

Neoplasms

Eye Diseases

Immune System Diseases

Skin and Connective Tissue Diseases

Wounds and Injuries

Diabetes Mellitus

Diabetes Mellitus, Type 2

Uterine Cervical Neoplasms

Macular Degeneration

Stress Disorders, Post-Traumatic

Parkinson Disease

Lewy Body Disease

Paralysis

Parkinsonian Disorders

Diabetes Mellitus, Type 1

Ovarian Neoplasms

Carcinoma, Ovarian Epithelial

Sclerosis

Multiple Sclerosis

Atrophy

Stress Disorders, Traumatic

Vaginal Neoplasms

Vulvar Neoplasms

Motor Neuron Disease

Amyotrophic Lateral Sclerosis

Huntington Disease

Uterine Neoplasms

Frontotemporal Dementia

Aphasia, Primary Progressive

Pick Disease of the Brain

Supranuclear Palsy, Progressive

Corticobasal Degeneration

Multiple System Atrophy

Shy-Drager Syndrome

Neuronal Ceroid-Lipofuscinoses

Syndrome

Aphasia

Metabolic Diseases

Glucose Metabolism Disorders

Endocrine System Diseases

Ganglion Cysts

Synovial Cyst

Basal Ganglia Diseases

Movement Disorders

Synucleinopathies

Autoimmune Diseases

Demyelinating Autoimmune Diseases, CNS

Autoimmune Diseases of the Nervous System

Demyelinating Diseases

Endocrine Gland Neoplasms

Ovarian Diseases

Adnexal Diseases

Genital Diseases, Female

Genital Diseases

Genital Neoplasms, Female

Urogenital Neoplasms

Gonadal Disorders

Uterine Cervical Diseases

Uterine Diseases

Retinal Degeneration

Retinal Diseases

Trauma and Stressor Related Disorders

Pathological Conditions, Anatomical

Neuromuscular Diseases

Spinal Cord Diseases

TDP-43 Proteinopathies

Proteostasis Deficiencies

Chorea

Dyskinesias

Heredodegenerative Disorders, Nervous System

Cognition Disorders

Vulvar Diseases

Autonomic Nervous System Diseases

Primary Dysautonomias

Hypotension

Vascular Diseases

Frontotemporal Lobar Degeneration

Speech Disorders

Language Disorders

Communication Disorders

Neurobehavioral Manifestations

Neurologic Manifestations

Ophthalmoplegia

Ocular Motility Disorders

Cranial Nerve Diseases

Vaginal Diseases

Lipidoses

Subjects in this group will have a diagnosis and/or medical history of a condition, disease, genetic background, or trait of interest.

Subjects in this group will serve as healthy controls.

Skin biopsy (2-3mm) and/or blood (up to 50 mL); saliva; excess/ leftover biospecimens that were (or will be) collected for other purposes (e.g., medical procedure).

Biological Sample Collection

Becca Wood

Lisa Voltolina

Scott Noggle

The New York Stem Cell Foundation (NYSCF) Research Institute is performing this research to accelerate diverse disease research using cells from the body (such as skin or blood cells) to make stem cells and other types of cells, conduct research on the samples, perform genetic testing, and store the samples for future use.

Through this research, researchers hope to identify future treatments or even cures for the major diseases of our time.

Researchers at the New York Stem Cell Foundation (NYSCF) Research Institute study diverse diseases, conditions, and traits by creating stem cells from biological samples. These "pluripotent" stem cells can become any cell in the human body, including cells that may be difficult, invasive, or impossible to obtain directly.

Additionally, researchers perform genetic testing to learn more about DNA, a material in most cells that contains instructions for the body's development and functions (such as traits like eye color and risk of certain diseases). A piece of DNA that determines the specific role of a cell is called a "gene." If the instructions in a gene are abnormal, this can lead to disease.

Participation in the study involves: (1) completion of health questionnaires, (2) providing a skin and/or blood sample from which stem cells may be created, (3) collection of a saliva sample for genetic analysis, and (4) possible future followup to provide additional information or learn about other research studies.

This study is not a clinical trial.

Skin biopsy (2-3mm) and/or blood (up to 50 mL); saliva; excess/leftover biospecimens that were (or will be) collected for other purposes (e.g., medical procedure)

NYSCF Scientific Discovery Biobank

Establishment of a diverse repository of biological samples, stem cell lines, derivatives, and associated information to support investigations into the biology, etiology, manifestations, progression, risk factors, genetic underpinnings, and treatment of diseases, conditions, and traits.

New York Stem Cell Foundation Research Institute

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Explore the Sharing Model Intervene to Improve the Knowledge, Attitudes, Service Intentions and Service Start-up Effects of the Eight Major Non-cancer Disease End-stage Caregivers on Well-being and Palliative Care	NCT05407272	Alzheimer Disea... Stroke Heart Failure Pulmonary Disea... Cystic Fibrosis... Chronic Liver D... Kidney Failure,... Kidney Failure,...	Health Educatio... manual	-	National Taipei University of Nursing and Health Sciences
NYSCF Scientific Discovery Biobank	NCT06203106	ALS Amyotrophic Lat... Alzheimer Disea... Alzheimer Disea... Alzheimer Disea... Batten Disease Corticobasal De... Dementia Frontotemporal ... Huntington Dise... Lewy Body Disea... Multiple Sclero... Multiple System... Parkinson Disea... Parkinson's Dis... Progressive Sup... INAD Diabetes Diabetes Mellit... Diabetes Mellit... Diabetes Mellit... Macular Degener... Ovarian Cancer Cervical Cancer Uterine Cancer Vaginal Cancer Vulvar Cancer PTSD Post Traumatic ...	Biological Samp...	30 Days -	New York Stem Cell Foundation Research Institute
Explore the Sharing Model Intervene to Improve the Knowledge, Attitudes, Service Intentions and Service Start-up Effects of the Eight Major Non-cancer Disease End-stage Caregivers on Well-being and Palliative Care	NCT05407272	Alzheimer Disea... Stroke Heart Failure Pulmonary Disea... Cystic Fibrosis... Chronic Liver D... Kidney Failure,... Kidney Failure,...	Health Educatio... manual	-	National Taipei University of Nursing and Health Sciences

Spots Global Cancer Trial Database for alzheimer disease, late onset