On April 21, 2022 SCCOHT/SMARCA4 Registry, based in Montreal, Canada hosted their first-ever online patient and family information session. See below for the recorded session.
Panelists included:
Dr. William Foulkes - Montreal
Dr. Amit Oza -Toronto
Dr. Joseph Pressey - Cincinnati
Dr. Glenn McCluggage – Belfast
Dr. Sidong Huang – Montreal
Dr. Basile Tessier-Cloutier – New York
If you have questions or would like more information, please contact the SCCOHT Registry at: sccoht@rimuhc.ca
JOIN THE FIGHT AGAINST SMALL CELL OVARIAN CANCER
NEW
Small Cell Carcinoma of the Ovary (SCCOHT) is a rare, highly malignant tumor that affects mainly young women. The median age of diagnosis is 24 years old. Approximately two thirds of patients with ovarian small cell carcinoma have hypercalcemia. SCCOHT is one of several types of ovarian cancer, all with the same general symptoms (See Symptoms Page). Small cell ovarian cancer is very aggressive and grows very quickly. Therefore, we believe the importance of finding and treating this cancer early, while the tumor is relatively small, is critical. Keep in mind; many doctors have never seen a patient with small cell ovarian cancer. Some doctors who see a young woman with subtle symptoms and no family history of cancer may suggest that she perhaps has indigestion, or some other minor ailment. You must be your own strong advocate. If the symptoms are sudden and constant for 2-3 weeks, please be persistent. YOU KNOW YOUR BODY BETTER THAN ANYONE.
It is with great pride we announce today that the new International Patient Registry is available for all. The SCCOHT-SMARCA4 Registry provides the research community access to information which will help advance research efforts into the very rare disease that is SCCOHT. This registry is being run by Dr. William Foulkes and his research team at McGill University Health Center.
The Registry is available for:
• Any person with a diagnosis of SCCOHT (past or present).
• Any person with a SMARCA4 variant.
• Relatives of loved ones diagnosed with SCCOHT or a SMARCA4 variant, who have unfortunately passed.
Anyone interested in participating in this Registry or would like more information can send an email to sccoht@rimuhc.ca or melissa.tachdjian@rimuhc.ca or via the registry website http://sccoht-smarca4.ca
Our mission is to raise awareness of the symptoms of ovarian cancer, make information about small cell ovarian cancer more readily available to future patients and their families, and to fund research into this dreadful disease.
This story aired on KUTV Channel 2 News in Salt Lake City, Utah on November 14, 2014. Thank you to all our supporters for your assistance in raising awareness and promoting research. CLICK HERE to watch.
Scientists discover the cause of Small Cell Carcinoma of the Ovary, Hypercalcemic Type! Researchers from TGen, Memorial Sloan-Kettering and McGill University all found the same gene mutation and therefore each study acted as confirmation of the others. Next step: targeted treatment! For links to the articles published in Nature Genetics on March 23, 2014, go to our Articles Page. For more information on each study, or to be a participant, see our Helpful Links page. There is still more to be done, all three studies need more tumor specimens for their continuing research.
The Ovarian Cancer National Alliance profiled our foundation in their September newsletter. CLICK HERE to read the article.
Small Cell Ovarian Cancer Foundation now has a
Facebook Page!! CLICK HERE to see our page.
KUTV News, Salt Lake City, did a piece about our story; you can watch it by CLICKING HERE
No warranty whatsoeverﾠis made that any of the information contained in the Small Cell Ovarian Cancer Foundation ("SCOCF") website is accurate, or that it applies to your specific situation. The medical information provided on this site cannot substitute for the advice of aﾠmedical professional. No one in any way connected to the SCOCF can take any responsibility for the results or consequences of any attempt to use any of the information presented on this web site. Nothing included on the smallcellovarian.org website should be construed as an attempt to offer or render a medical opinion or otherwise engage in the practice of medicine.
Form 990, 1023, and financial statements are available upon request.
