Allied Health Professionals

Peer Support Program

The Familial Gastrointestinal Cancer Registry (FGICR) is committed to offering support to families with hereditary gastrointestinal cancer and polyposis syndromes. An important part of this support is our ability to connect people who share the same hereditary conditions. Individuals and families involved in the FGICR have found it very helpful to connect through the Peer Support Program, and have benefited from sharing experiences with each other. Research has also shown peer support programs to have social and emotional benefits.

As these hereditary conditions may be rare, we would greatly appreciate if you would be willing to be included in our Peer Support Program (aka. Buddy System). This program matches people based on diagnosis and other factors. Matches are made on request, and have been particularly helpful at the time of a new diagnosis, around the time of a surgery, and when parents have concerns about their children.

If you are willing to be included in our Peer Support Program, please complete the form below

Pancreatic Mutation Identification Survey

Dear Genetic Counsellor:

In this survey, you will be shown twenty to twenty-five real pedigrees where the proband has been diagnosed with pancreatic cancer and asked to provide an estimate from 0 to 100% of the likelihood that the proband carries a pathogenic mutation in BRCA1 or BRCA2. These probands were recruited prospectively in an unselected manner from a multidisciplinary pancreatic cancer clinic. You will also be asked to provide basic demographic data.

All probands have been diagnosed with pancreatic adenocarcinoma. Where there was additional pathological information, for example, rhabdoid features, this is also provided.

Each proband's ethnicity is provided. Ashkenazi Jewish probands are specifically identified as such.

Cancer diagnoses are provided under the individuals in the pedigrees as "diagnosis age (source of diagnosis)", for instance, "pancreatic adenocarcinoma 86 (PA)". The source of diagnosis is as follows:

PA: Pathology reports
MR: Medical record
HX: History alone
AR: Autopsy report
DC: Death certificate
OCR: Ontario Cancer Registry.

Otherwise, the pedigrees follow the recommended nomenclature of the National Society of Genetic Counsellors.

Click on this link to go to the survey: https://ddcrc.mshri.on.ca/NoviSurvey/n/bipac15.aspx

If the survey has been answered the maximum number of times, please refresh this page and try the next survey

Sincerely,

Robert Grant, Spring Holter, Ayelet Borgida, and Steven Gallinger

Mount Sinai Hospital, Toronto, Canada.

 

Abdominal Sarcoma Research Program

Sarcoma is a rare cancer that arises from connective tissues (e.g. muscle, fat, bone) and affects both children and adults. In adults, approximately 1% of all cancers are sarcoma. There are over 40 different types of sarcoma, with less than half of all sarcomas occurring in the abdomen. Mount Sinai Hospital is the Centre of Excellence for Sarcoma in Canada in collaboration with Princess Margaret Cancer Centre. The Abdominal Sarcoma Research Team has adopted a multidisciplinary approach to patient care as sarcoma can be treated by a combination of radiation, chemotherapy and surgery, depending on the type of sarcoma.
The Abdominal Sarcoma Clinical Research Program was established in 2009 by Dr. Rebecca Gladdy and Dr. Carol Swallow, Surgical Oncologists at Mount Sinai Hospital and Princess Margaret Cancer Centre, who also have research programs at the Lunenfeld-Tanenbaum Research Institute (LTRI). This program was developed to address a ‘bench to bedside’ approach in Abdominal Sarcoma, where the clinical research team continues to provide an essential link between the laboratory (“bench”) and the point of patient care, be it hospital (“bedside”), physician’s office or outpatient clinic.

The goals of our Abdominal Sarcoma Research Program include:

•    Discovering more effective treatments for sarcoma patients to manage the challenges of recurrence of their cancer.
•    Contributing to international research in sarcoma including clinical trials and scientific publications.
•    Enhancing the quality of life for sarcoma patients by improving functional outcomes and providing a support network during the process of cancer care.
•    Educating and networking with health care workers outside of the sarcoma community to better recognize and manage sarcoma across Canada.

Recent Research Developments in the Abdominal Sarcoma Program:

MSH Abdominal Sarcoma Database:
Since sarcoma is rare, most of what we know about these tumours has been found by following our patient’s outcomes over a long period of time. We invite all new patients to the sarcoma program at Mount Sinai Hospital to join us by agreeing to participate in improving our knowledge of this disease by being part of the database. Our clinical research database, established in 2009, is a wealth of information for the Abdominal Sarcoma team at Mount Sinai Hospital and our international collaborators. This data is used to improve the quality of care and outcomes for future patients.

Sarcoma Tissue and Cell Line Biorepository:
A significant challenge researchers face is the lack of laboratory models that can be used to study sarcoma. Thus, we have built a biorepository of patient tumour tissue taken at the time of surgery and developed primary sarcoma cell lines also from operative specimens. Dr. Gladdy’s lab at LTRI creates and maintains these sarcoma cell lines for use in our program, by other researchers at the University of Toronto and international collaborators. Each cell line and tumour sample is linked to a unique number in the Sarcoma Database for correlation between laboratory research and clinical data.

Sarcoma Cell Lines

Participation in International Sarcoma Research:
We are currently participating in an International Phase III clinical trial (STRASS trial) that is designed at improving treatment options for retroperitoneal sarcomas. The goal of this study is to determine if adding pre-operative radiation improves outcomes in sarcoma patients following surgery, specifically what effect combined treatment has on tumor recurrence and survival.  Currently, we are the third highest recruiting site worldwide (45 active sites) and the top recruiter in North America. We have also published several clinical papers from our own research group and also in collaboration with our international partners. Further, we played an integral role in a pivotal report by the Trans-Atlantic Retroperitoneal Sarcoma Working Group, reporting the combined outcomes of 1007 primary sarcoma patients from 8 Sarcoma Centres which was published in the premier surgical journal, the Annals of Surgery.

Development of Selective Therapies for Sarcoma:
One of the long-term goals of our research program is to devise innovative laboratory models to help discover better drug therapies for sarcoma. Our laboratory programs strives to understand the genes that drive sarcoma and we have been performing comprehensive genetic tests in the lab to find drug targets that could be effective to many different types of sarcoma. Therefore, we are focused on asking questions and designing experiments that we hope will ultimately refine patient treatment plans, alleviate drug side effects and as a result, improve patient outcomes.

Upcoming Events
2nd Toronto International Sarcoma Symposium-June 10th 2016 at the Park Hyatt, Toronto

After successfully holding our 1st International Sarcoma Symposium in 2014, where International Sarcoma Experts discussed novel directions of sarcoma care with clinicians and patients, we are delighted to be organizing the second Sarcoma Symposium this year. .To date, we have several international sarcoma experts attending along with planned sessions in patient experience and palliative care. Details on this upcoming event can be found at www.torontosarcomasymposium.com.

 

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