STUDIES, SURVEYS AND CLINICAL TRIALS

Your support of research studies, clinical trials and surveys are a critical component of the Mission, to support work that leads to improvements in the health and well-being of individuals and families affected by HDGC. Participation is an interesting and rewarding way to advance research, and often times has a reach far beyond the HDGC Community. When possible results of these studies, trials and surveys will be published on site.

You can help by checking in regularly to discover new opportunities, and by spreading the word to others who may be qualified participants. Please spread the word by sharing information with your medical care providers, family and friends, and posting on your social media pages.

Dating and disclosure in young adults with a hereditary cancer predisposition syndrome: A quantitative analysis

My name is Erin Hediger, and I am a genetic counseling student at the University of Arkansas for Medical Sciences.

 

I am conducting a study examining the experiences of young adults (ages 18-39) with hereditary cancer predisposition syndromes when it comes to dating and sharing information about a diagnosis to romantic partners. The purpose of this study is to improve awareness of oncology and genetics health professionals, including genetic counselors, who help patients with the emotional components of a hereditary cancer diagnosis.

 

If you choose to participate, you will complete a one-time online survey where you will respond to statements about the types of concerns, feelings, values, and beliefs you have when it comes to dating and deciding to disclose a diagnosis of a hereditary cancer predisposition syndrome to a romantic partner. You will be asked to list your current age, age at diagnosis, gender, the type of hereditary cancer predisposition syndrome you have, how you were diagnosed, your current cancer status, and your sexual orientation. You will not have to provide any identifiable information (name, address, date of birth, SSN, etc.). By completing the survey, you will also have the chance to be entered into a drawing for a $100 Amazon gift card.

 

For more information about the study, you can access the survey and consent information by clicking on the link below that will take you directly to the SurveyMonkey survey.

https://www.surveymonkey.com/r/FL5CK3

 

 

If you have questions about the study or consent information, you may contact me by phone or email.
Erin Hediger | EEHediger@uams.edu | (314) 914-1100

 

 

Understanding the lived experience of young adults carrying a CDH1 gene mutation

Yi Liu, a genetic counseling program student at Virginia Commonwealth University, is conducting a research study. The goal of the study is to have a better understanding of the lived experience of young adults carrying a CDH1 mutation. The finding will help health providers to develop tailored discussion and materials for this population on medical management options.

 

Yi is looking for participants who (a) are age 18-29; (b) have tested positive for a pathogenic or likely pathogenic variant in the CDH1 gene; (c) have not undergone gastrectomy; (d) are English speaking; (e) have not had gastric or lobular breast cancer; and (f) have seen a gastric healthcare provider to discuss management options.

 

Participation is through individual telephone interviews of approximately 30-60 minutes. The goal is to have interviews completed in mid November, 2019. Findings will be shared here upon completion of the project.

Participants will receive a $10 gift card to thank them for participation.

 

If you have questions or would like more information about the study, please contact:
Yi Liu
Genetic counseling program student
Virginia Commonwealth University
liuy53@mymail.vcu.edu
(301)512-4773

 

Patient attitudes to genome editing for prevention of heritable disorders: Social and Ethical implications

You have been invited to take part in a research study conducted by University College London (UCL). The study aims to explore the opinions and knowledge of those in heritable disease communities regarding genome editing and its applications. This research is in the form of an online survey. The survey will explore the different aspects of the technology itself, as well as its applications in a medical setting for the treatment of heritable disease. The study will also explore the attitudes of people with experience of heritable diseases towards the introduction of genome editing in embryos for correction of mutations.

 

We are looking for a variety of people within these communities, those affected and also their family members. Additionally, anyone who is involved in the community but does not have a family member affected is also welcome to join.

 

The survey can be completed via the weblink on smart phones, on laptop or desktop and should not take more than 15 minutes to complete. We really hope to broaden the discussion to allow all disease communities to be heard. Your time and input are truly appreciated.
Take the survey.

 

For more information contact:
Issi Platt
iBSc Women’s Health Student
UCL Institute for Women’s Health
84-86 Chenies Mews, Bloomsbury, London WC1E 6HU
University College London
issi.platt.16@ucl.ac.uk
Mobile number: (+44)7752086432

Confocal Endoscopic Microscopy for Detection of Early Stage Gastric Cancer in Subjects with Hereditary Diffuse Gastric Cancer Syndrome

Jeremy L. Davis MD, National Cancer Institute (NCI), Bethesda MD
Objective: To see if a small microscope attached to an endoscope to inspect the stomach lining is better than regular endoscopy to find the first signs of cancer in the stomach.
Overview of NIH Research Study Learn more about the study, including eligibility guidelines.
Informational Video
Note: This study is open to people ages 18 and older who have a personal or family history of a hereditary gastric cancer syndrome or have a mutation that is known to lead to gastric cancer.

Additional remarks from Dr. Jeremy Davis, Principal Investigator (Jan 19, 2019)
Patients need to know that current recommendations for risk-reducing (i.e. prophylactic) total gastrectomy are not determined by the results of the endoscopy with gastric biopsies. I tell patients that annual surveillance with endoscopy is meant for those patients who choose NOT to have a total gastrectomy. It is possible with our study to learn that confocal endoscopy is very good at detecting early stage gastric cancer in patients who have chosen to delay TG. Only then might it be possible to safely recommend that patients can delay total gastrectomy. But we are not anywhere close to that yet. Endoscopic surveillance is not a very reliable alternative to TG at this time. I hope we’ll know more a year from now.

 

JLD

Hereditary Diffuse Gastric Cancer (CDH1): Patient process of discovery.

Principal Investigator: Cheryl Hersperger, University of Massachusetts Medical School
Objective: The aim of this study is to understand the discovery and decision-making processes both for the discovery of finding the CDH1 marker and afterwards when deciding to have surgery to remove your stomach or to participate in watchful waiting with periodic biopsies of the stomach.
Study Overview
Study Fact Sheet Learn more about the study including eligibility requirements, privacy, compensation and contact information.

Hereditary Gastric Cancer Syndromes: An Integrated Genomic and Clinicopathologic Study of the Predisposition to Gastric Cancer

Jeremy L. Davis MD, National Cancer Institute (NCI), Bethesda MD
Objective: To study the causes of gastric cancer and provide comprehensive cancer care to patients and families with hereditary gastric cancer syndromes.
Overview of NIH Research Study Learn more about the study, including eligibility guidelines.
Patient Recruitment Information
Additional information about this study.
Note: This study is open to all HDGC patients and families, with or without confirmed CDH1 gene mutation, and pre- or post-surgery. Study participants who choose to travel to NIH receive study-related care at no cost. Participants are eligible for paid travel to and from NIH, providing travel is within the United States. Travel to NIH is not necessary in all instances of study participation. International patients and families may be eligible to participate.

STUDY: LOOKING FOR 10,000 WOMEN, US

SoftVue Scans to help doctors see through dense breast tissue, improving breast cancer detection.
KTVN News SoftVue Scans to Detect Breast Cancer
SoftVue Study Information and Eligibility Requirements

FAMILIAL GASTRIC CANCER STUDY, UK

Cambridge University Hospitals familial gastric cancer study aims to identify new gastric cancer predisposing genes and to improve the treatment and management of individuals with an inherited predisposition to gastric cancer.
Study Information and Eligibility Requirements