Hi Alice,
It was great talking with you this morning.
As mentioned, we have recently launched the ClinTrial Refer Cancer Genetics app. The app was developed to increase accessibility to research studies involving hereditary cancer, especially for people living in rural and regional Australia.
It is free, both to download and to list trials. (see http://cancergenetics.com.au/clintrial-refer-cancer-genetics/)
I’ve attached the media release, perhaps for inclusion in your newsletter?
The app is hosted by The Cancer Genetics Fund, a registered charity committed to preventing cancer and its effect on individuals and families by promoting awareness of hereditary cancer syndromes and their management. I am an unpaid director and spokesperson.
Our Goals, as outlined in our constitution, are:
- To actively encourage research into hereditary cancer syndromes
- To increase accessibility to research studies involving hereditary cancer, especially for people living in rural and regional Australia, via a website and/or app such as ClinTrials Refer Cancer Genetics
- To raise awareness of hereditary cancer syndromes, their causes and management
- To promote the prevention and/or control of cancer and other diseases caused by hereditary cancer syndromes by promoting the understanding and implementation of evidence-based risk management strategies.
- To disseminate information on hereditary cancer syndromes to medical practitioners, allied health workers and the general public, regardless of where they live in Australia, via workshops, seminars, newsletters, webinars and other media
The more people enrolled in research, the closer we get to understanding, treating and preventing cancer and postcode shouldn’t be a barrier to being involved.
Sincerely,
Hilda
Dr Hilda High, Genetic Oncologist
Linking patients with researchers regardless of postcode
The Cancer Genetics Fund launches the ClinTrial Refer Cancer Genetics App
The majority of eligible rural and regional Australians are not involved in research.
Dr Hilda High, Genetic Oncologist, explained: “I do a lot of Telehealth to rural and regional areas of Australia. Many of patients and families are very keen to be involved in research. But they think that they have to live in a capital city”.
Most cancer genetics trials DON’T require the patient to live close to the researchers. For example, patients can answer a questionnaire online or over the phone, send their DNA or tumour block to the research lab or attend annual screening in a tertiary metropolitan hospital.
New trials become available all the time. Keeping up to date can be difficult for genetic counsellors let alone for GPs.
That’s where the Cancer Genetics version of the already widely used ClinTrial Refer app comes in.
Let’s say you have a strong family history of pancreatic cancer. You can use the App to find screening and prevention trials. On the other hand, if you and your family have a history of bowel polyps, you can find studies investigating why the polyps occur and novel ways of preventing them.
The ClinTrial Refer Cancer Genetics App displays all the information you need: what the trial is about, what features you or your family need to have and even who to contact. Some trials ask that your specialist refers you while others are very happy for patients to contact them directly.
The app is free, for patients and doctors as well as for the researchers. It is hosted by The Cancer Genetics Fund, (www.CancerGenetics.com.au), a registered charity committed to preventing cancer and its effect on individuals and families by promoting awareness of hereditary cancer syndromes and their management.
“Understanding the hereditary cause of cancers has wide reaching benefits, including unlocking new treatments for all patients with cancer”, said Dr High, an unpaid director of The Cancer Genetics Fund. “The more people enrolled in research, the closer we get to understanding, treating and preventing cancer.”
