Nutritional and Metabolic Diseases

Symptoms and General Pathology

All Conditions

Dehydration

Death

Water-Electrolyte Imbalance

Metabolic Diseases

Survey of Palliative care physicians from Latin America and Spain

10-15 minute online survey to assess palliative care physicians' attitudes, beliefs and practice patterns related to parenteral hydration at the end of life in Latin America and Spain.

Survey

Isabel Torres, MPH, DRPH

The purpose of this study is to assess palliative care physicians' attitudes, beliefs and practice patterns related to parenteral hydration at the end of life in Latin America and Spain.

Objectives:

1. To assess palliative care physicians' attitudes, beliefs and practice patterns related to parenteral hydration at the end of life in Latin America and Spain.
2. To assess cross-national differences in practice patterns related to parenteral hydration at the end of life. (Latin America vs. Spain).
3. To determine the percentage of physicians who practice parenteral hydration at the end-of-life in the hospital setting and the home setting.
4. To examine the association between providers' parenteral hydration practice patterns and:

   * 1. provider demographic characteristics;
   * 2. specific characteristics of their practice settings; and
   * 3. training and experience in end of life care;
5. To determine which factors most predict the practice of parenteral hydration at the end of life among palliative care physicians.

This study is a collaboration between MD Anderson's Departments of Palliative care and Rehabilitation Medicine, Health Disparities Research, the Latin American Association for Palliative Care (ALCP) and the Spanish Society for Palliative Care (SECPAL). The proposed study involves a 10-15 minute online survey of palliative care physicians from Latin America and Spain to assess their attitudes, beliefs and practice patterns related to parenteral hydration at the end of life.

Physician Perceptions About Parenteral Hydration in Latin America and Spain

Physician Perceptions About Parenteral Hydration in Latin America and Spain: A Survey of Physicians Affiliated With the Latin American Association for Palliative Care (ALCP) and the Spanish Society for Palliative Care (SECPAL)

M.D. Anderson Cancer Center

Participants will take the self-appraisal survey prior to interacting with the O2O program via the online Chatbot.

Participants will take the self-appraisal survey after interacting with the O2O program via the online Chatbot. (This arm will also answer additional questions regarding participants' satisfaction with the O2O Chatbot.)

Participants respond to online survey questions either before or after using the Chatbot O2O intervention.

Online Survey

An online, automated, menu-based agent in which all responses are pre-programmed to be consistent with the existing O2O program. The chat-like responses help guide the participant through a process with the goal of developing a list of questions for their upcoming appointment with a cancer clinician. The session is meant to be completed in one sitting and estimated to take about 45 minutes to complete (including the pre- or post-intervention survey); however, if a participant stops in the middle, they may go back and complete the Chatbot session (or survey).

Chatbot prototype

Evidence-based program developed by Cancer Support Community that helps patients actively engage in their treatment decision process by preparing them for their upcoming appointments.

Open to Options (O2O) Program

Sarah Hawley, PhD, MPH

This study is designed to study the feasibility and acceptability of the Open to Options (O2O) Chatbot prototype. The O2O program is an existing patient support program with content currently delivered via in-person counseling with a trained mental health professional or via an existing web-based program (Let's Talk Treatment Options).The Chatbot is an automated, menu-based agent being developed in this study to extend the reach and accessibility of the O2O program via the Chatbot's "virtual coaching".

This is a pilot study to assess feasibility and acceptability, and to gather preliminary data on how patients with a diagnosis of cancer appraise being prepared for their upcoming visit with a cancer specialist. Participants will be randomized to take a survey either before or after their Chatbot interaction. The surveys collect participants' self-appraisal regarding preparedness for their upcoming appointment with a cancer physician, cancer distress and cancer anxiety. The study will examine whether patients who take the survey after viewing the Chatbot feel more prepared for their upcoming appointment than those who take the survey before the Chatbot interaction.

Patient-centered Development of the Cancer Support Community's Open to Options ®Chatbot Program

Patient-centered Development of the Cancer Support Community's Open to Options ®Chatbot Program Cancer Treatment Support in Partnership With the Cancer Support Community

Mean values of the following 5 self-appraisals:

* Cancer related distress \[scale from 0 (none) to 10 (extreme)\]
* Cancer diagnosis anxiety \[scale from 0 (none) to 10 (extreme)\]
* Self-efficacy for question asking \[scale from 0 (not at all confident) to 10 (extremely confident)\]
* Decision preparedness \[scale from 1 (not at all) to 5 (a great deal)\]
* Decision self-efficacy \[scale from 0 (not at all confident) to 4 (very confident)\]

The mean values will be compared by group (pre- vs. post-intervention survey group) using t-tests.

The feasibility of integrating an Open to Options (O2O) Chatbot into the clinical workflow, assessed by the number of patients who accept the invitation to receive more information about the study, among all those invited.

Assessed by the number of patients who log-in to the O2O Chatbot program and create an account, among all those who accepted the invitation to receive information.

Assessed by the number of patients who proceed to view the full Chatbot prototype and generate a summary, among all those who created an account.

Post-Intervention Survey Group only: In addition to the survey given to all participants, the post-intervention survey group will answer 6 questions about their perception of the Chatbot prototype. Each of the 6 questions will be scored on a scale from 1 (strongly disagree) to 5 (strongly agree). Investigators will calculate the mean value (and Standard Deviation) on a 1-5 scale for each question.

Post-Intervention Survey Group only: In addition to the survey given to all participants, the post-intervention survey group will answer 6 questions about their perception of the Chatbot prototype. Each of the 6 questions will be scored on a scale from 1 (strongly disagree) to 5 (strongly agree). For each of the six questions, investigators will calculate the percentage of participants who strongly agree.

Cancer Support Community

University of Michigan Rogel Cancer Center

Neoplasms

Respiratory Tract (Lung and Bronchial) Diseases

Lung Neoplasms

Epidemiological Survey (approx 200 questions)

Richard Erwin

Jorge Nieva, MD

Richard Erwin, BS

Barbara Gitlitz, MD

This is a 100% virtual (remote), case-case study to explore potential environmental, lifestyle and genetic factors that may be associated with driver mutations of young lung cancer in the U.S.

Epidemiology of Young Lung Cancer - Survey

This is a 100% Virtual (Remote) Study (Survey, and Voluntary Blood Donation) to Explore Potential Environmental, Lifestyle and Genetic Factors That May be Associated With Driver Mutations of Young Lung Cancer in the USA.

Exploratory correlations between all questionnaire variables (demographic factors, medical history, smoking history, early life exposures (child and mother), residential history, occupational history, menstrual and reproductive history, diet, and physical activity.

University of Southern California

Ohio State University Comprehensive Cancer Center

Addario Lung Cancer Medical Institute

Kang Yu, M.D.

This is a national-wide online survey, which aims to investigate the nutritional status and dietary intakes in Chinese discharged patients with cancer. It will provide relevant data for the "White Paper on Nutritional Diet of Cancer Patients in China", and also provide reference for the relevant work of nutrition support for cancer patients in clinical practice.

Nutritional status has significant impact on clinical outcome and quality of life in patients with cancer. Current surveys show that about 30-80% of patients with cancer have nutritional risk and/or malnutrition, and about 20% of the patients' death are directly caused by malnutrition. Appropriate and standardized nutrition therapy might not only improve the nutritional status, but also the clinical outcomes of patients with cancer, and improve their life quality and dignity.

At present, there is still lack of large-scale investigation and research on nutritional status and dietary intakes in discharged patients with cancer in China, and thus affects the overall level of nutritional management for cancer patients, as well as the formation of related guideline.

Therefore, we will conduct a national-wide cross-sectional online survey, which aim to investigate relevant data of nutritional status and dietary intakes among discharged patients with cancer. Data will be collected through an online semi-structured questionnaire using WeChat forms with a consent form. The link to the questionnaire was sent through emails, WeChat App groups, and other social media. The participants were encouraged to roll out the survey, and send the link to more patients as they could. On receiving and clicking the link, the participants will be directed to the information about the study and informed consent. After they accept to take the survey, they will fill up the demographic details and answer a set of questions related to nutritional status and dietary intake investigation.

Online Survey of Nutrition Status in Chinese Non-hospitalized Cancer Patients

Online Survey of Nutritional Status and Dietary Intakes in Chinese Non-hospitalized Patients With Cancer

the prevalence of nutritional risk according to NRS-2002 criteria

the the prevalence of dietary reduction and weight loss

the description of nutrition support methods of Chinese discharged cancer patients

Peking Union Medical College Hospital

Professor

Part 1: online survey (quantitative) with questions on basic socio-demographic data, medical data and family characteristics (e.g. age, ethnicity, education) and information about FP.

online survey

Part 2: At the end of the online survey, participants are invited to attend one of the consecutively performed focus groups conducted according to standardized focus group methodology and moderated by a clinical psychologist and a specialist in reproductive medicine.

focus group meeting

Sibil Tschudin, PD Dr. med

This is a single center cross-sectional retrospective study with a quantitative and qualitative approach (phase 1 and 2). In phase 1 an online survey will be realized and targets male cancer survivors. Phase 2 will take a qualitative approach, in which information about patient's experiences, needs and helpful support will be collected by establishing focus groups of cancer patients who had been diagnosed during the reproductive age.

In the end, the results of this study will be integrated into the development of an online support tool concerning Fertility Preservation (FP).

Fertility Preservation in Men Affected by Cancer

Fertility Preservation in Men Affected by Cancer: Assessment of Patients' Needs and Development of an Online Decision-aid

Phase 1: exploratory online survey inquiring male cancer patients level of information with regard to FP

Phase 2: interview (strictly exploratory) in focus groups collecting data on male cancer patients level of information with regard to FP

exploratory online survey inquiring which kind of support regarding decision-making about FP do male cancer patients consider helpful

exploratory online survey inquiring how an online Decision Aid (DA) tool about FP has to be designed in order to be helpful for male cancer patients

Phase 2: interview (strictly exploratory) in focus groups evaluating which kind of support regarding decision-making about FP male cancer patients consider helpful

Phase 2: interview (strictly exploratory) in focus groups evaluating how an online DA tool about FP has to be designed in order to be helpful for male cancer patients

Krebsforschung Schweiz, Bern, Switzerland

University Hospital, Basel, Switzerland

Skin and Connective Tissue Diseases

Diseases and Abnormalities at or Before Birth

Musculoskeletal Diseases

Rare Diseases

Skin Diseases

Carcinoma

Carcinoma, Squamous Cell

Genetic Diseases, Inborn

Congenital Abnormalities

Skin Abnormalities

Epidermolysis Bullosa

Epidermolysis Bullosa Dystrophica

Skin Neoplasms

Skin Diseases, Vesiculobullous

Skin Diseases, Genetic

Rheumatic Diseases

Collagen Diseases

Connective Tissue Diseases

Dystrophic Epidermolysis Bullosa

Recessive Dystrophic Epidermolysis Bullosa

Participants will complete an online survey and submit photographs.

In this study, an artificial intelligence model to detect squamous cell carcinomas (SCC) on photos of recessive dystrophic epidermolysis bullosa (RDEB) skin is developed. The ultimate goal is to integrate this model into an app for patients and physicians, to help detect SCCs in RDEB early.

SCCs which rapidly metastasize are the main cause of death in adults with RDEB. The earlier an SCC is recognized, the easier it can be removed and the better the outcome. AI leverages computer science to perform tasks that typically require human intelligence and has recently been used to identify skin cancers based on images. We are currently developing an AI approach for early detection of SCC and distinction of malignancy from chronic wounds and other RDEB skin findings. The aim is to create a web application for patients with RDEB to upload images of their skin and get an output as to SCC present/ no SCC. This will be especially valuable for patients with difficult access to medical expertise and those who are hesitant to allow full skin examination at each visit, often because of fear of biopsies. Thus, this project will directly benefit patients by allowing early recognition of SCCs and will empower patients and their families by providing a home use tool.

So far, the study team has mainly used professional images (photographs taken in hospital settings by physicians, nurses, and clinical photographers) of both SCCs in RDEB and images of RDEB skin without SCC to develop and train the AI model. The images that are expected in a real-life setting will mostly be pictures taken by patients or family members with their phones or digital cameras. These images have different properties regarding resolution, focus, lighting, and backgrounds. Incorporating such images will be crucial in the upcoming phases of model development-testing and validation-for the web application be a success for patients.

This project will enroll adolescents and adults with RDEB and history of at least one SCC. The survey and consents will be provided in English, Spanish, German, French, Arabic, Chinese, and Russian. The study team is inviting people with RDEB around the world to participate and are hoping that approximately 100 people will provide images.

Participants will be asked to complete the survey and upload photographs of SCC(s) using the links below. Depending on the number of SCCs they have had and the number of photos they want to provide, the survey will take approximately 15-20 minutes to complete.

To participate in this study, please follow this link:

https://redcap.nubic.northwestern.edu/redcap/surveys/?s=JH9LHR4CC4R4H3HN

Artificial Intelligence Patient App for RDEB SCCs

Developing a Novel Artificial Intelligence Patient App to Recognize Squamous Cell Carcinoma (SCCs) in Recessive Dystrophic Epidermolysis Bullosa (RDEB): Image Collection

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Physician Perceptions About Parenteral Hydration in Latin America and Spain	NCT01011140	Dehydration Advanced Cancer...	Survey	18 Years -	M.D. Anderson Cancer Center
Patient-centered Development of the Cancer Support Community's Open to Options ®Chatbot Program	NCT04616651	Cancer	Online Survey Chatbot prototy... Open to Options...	18 Years -	University of Michigan Rogel Cancer Center
Epidemiology of Young Lung Cancer - Survey	NCT04640259	NSCLC	Online Survey	18 Years -	Addario Lung Cancer Medical Institute
Online Survey of Nutrition Status in Chinese Non-hospitalized Cancer Patients	NCT04778540	Survey Nutrition Statu... Cancer Patient		18 Years -	Peking Union Medical College Hospital
Physician Perceptions About Parenteral Hydration in Latin America and Spain	NCT01011140	Dehydration Advanced Cancer...	Survey	18 Years -	M.D. Anderson Cancer Center
Fertility Preservation in Men Affected by Cancer	NCT03876366	Cancer	online survey focus group mee...	18 Years -	University Hospital, Basel, Switzerland
Artificial Intelligence Patient App for RDEB SCCs	NCT05843994	Epidermolysis B...	online survey	12 Years -	Northwestern University
Epidemiology of Young Lung Cancer - Survey	NCT04640259	NSCLC	Online Survey	18 Years -	Addario Lung Cancer Medical Institute
Physician Perceptions About Parenteral Hydration in Latin America and Spain	NCT01011140	Dehydration Advanced Cancer...	Survey	18 Years -	M.D. Anderson Cancer Center
Online Survey of Nutrition Status in Chinese Non-hospitalized Cancer Patients	NCT04778540	Survey Nutrition Statu... Cancer Patient		18 Years -	Peking Union Medical College Hospital

Spots Global Cancer Trial Database for online survey