Finding current Clinical Trials in progress
Where do I find current trials in progress?
One of the key findings from our study Exploring clinical trials awareness, information, access and participation amongst Australians with ovarian cancer: a qualitative study was that many women said they struggle to find current clinical trials, both here in Australia and internationally.
I've constantly asked about clinical trials, and I've just found that it's been very difficult to get the relevant information or get the right detail.
If you or someone close to you has ovarian cancer and are thinking about going on a clinical trial, it is very important that you know where to look to find reputable, accurate and up-to date information. There is not currently one place to find clinical trials for people with ovarian cancer. However, Tables A, B and C list excellent resources for finding clinical trials in Australasia, the United States and Europe. Most of the sites will allow you to search by cancer type, location of the trial and sometimes for specific treatments currently being tested (e.g. chemotherapy, immunotherapy). This makes it easier to find trials specifically for your individual needs. You may like to read the How to navigate these resources, in the following section.
Table A: Clinical Trials resources — Australiasia
Search these websites for information on Ovarian Cancer Clinical Trials
| Organisation | Description |
|---|---|
| Australia New Zealand Gynaecological Oncology Group www.anzgog.org.au | Provides information on gynaecological cancer clinical trials in Australia and New Zealand |
| Ovarian Cancer Research Foundation www.ocrf.com.au | Provides updates on ovarian cancer research in Australia |
| Australian Cancer Trials www.australiancancertrials.gov.au | Lists clinical trials in Australia for various types of cancer |
| Cancer Council SA www.cancersa.org.au | Provides information on cancer trials in South Australia |
| Cancer Institute NSW www.cancer.nsw.gov.au | Provides information about clinical trials in New South Wales |
| Victorian Cancer Trials www.victoriancancertrials.gov.au | Lists cancer clinical trials in Victoria, Australia |
| Western Australia Cancer Clinical Trials Registry www.cancerwa.asn.au | A registry of clinical trials in Western Australia |
| ClinTrial Refer www.clintrial.com.au | A clinical trial referral service in Australia that helps patients find appropriate trials for various cancers |
| eviQ https://www.eviq.org.au/ | A free resource of evidence-based, consensus-driven cancer treatment protocols and information |
International Trials
The international resources listed in Tables 6 and 7 may be useful for Australian women who are interested in joining a trial overseas.
Not all international trials will be suitable for you. Ask your oncologist and/or specialist cancer nurses for help with understanding the eligibility criteria for each trial. They can guide you through the enrolment process if they think a specific trial might help you.
Table B: Clinical Trials resources — United States
Search these websites for information on Ovarian Cancer Clinical Trials
| Organisation | Description |
|---|---|
| ClinicalTrials.gov www.clinicaltrials.gov] | A database of clinical trials worldwide, maintained by the US National Library of Medicine |
| National Cancer Institute (NCI) www.cancer.gov/about-cancer/treatment/clinical-trials | A US government resource providing comprehensive information on clinical trials in the US and worldwide |
Table C: Clinical Trials resources — Europe
Search these websites for information on Ovarian Cancer Clinical Trials
| Organisation | Description |
|---|---|
| Cancer Research UK Clinical Trials Database www.cancerresearchuk.org | Lists cancer clinical trials happening in the UK and globally |
| EU Clinical Trials Register www.clinicaltrialsregister.eu | Lists clinical trials across the European Union |
| National Institute for Health Research www.nihr.ac.uk | Provides information on clinical trials in the UK and internationally |
| Medical Research Council www.mrc.ac.uk | Funds and provides information on clinical trials in the UK |
| International Cancer Research Partnership www.icrpartnership.org | Provides access to clinical trials and cancer research worldwide |
| European Organisation for Research and Treatment of Cancer www.eortc.org | Conducts and provides information on clinical trials focused on cancer treatments |
How to navigate these resources
How to navigate these resources
Navigating information on clinical trials databases can be overwhelming, especially when you are currently going through cancer treatment. Feeling tired and lacking energy can be a big barrier to finding information about appropriate clinical trials.
Barriers for me would be … just the energy to invest in looking for information whilst I’m undergoing active treatment.
The websites in Tables A, B and C help make the process easier. You can search for:
cancer type (e.g. ovarian cancer, solid tumours, gynaecological cancers)
cancer stage (e.g. trials for cancer that has spread)
trial location (including international options)
treatment you are interested in (e.g. immunotherapy, chemotherapy, new drugs).
If you find a trial that interests you, we recommend that you save it to your phone and take it to your doctor to discuss. Cancer specialists are used to people doing this and want to help you if they feel the trial may benefit you.
More information: Joining a clinical trial
Definition: Solid Tumours
Solid tumours are cancers that form in organs such as the lung, prostate, breast or ovary. If you read that a trial is investigating ‘solid tumours’ it means that the treatment may be effective on more than one type of cancer. So a treatment that is effective on a lung cancer may also be effective on an ovarian cancer.
It would be good to … click in and just see all the trials and where they are at the moment and where they're going on. There's a fair few out there.
Whether you are looking for a local clinical trial or one overseas, there are many resources to help guide you. If you are unsure where to start, ask your treating team (doctors and nurses), who can explain how to navigate these resources and find the best clinical trials for your individual situation.
Talking to other women with ovarian cancer through support networks can also be helpful and reassuring.
Clinical Trial Results
Clinical trial results for ovarian cancer can take a long time to become available to the public. This is because trials need to collect and analyse a lot of data before any recommendations can safely be made.
Research teams monitor participants over a long period of time to see how a new treatment works in comparison to the current standard treatment.
The team also needs to look at:
side effects
the impact on participants’ long-term health
how the treatment affects overall survival rates.
This process can take many years, and sometimes further trials are needed to accurately and safely confirm the findings before a treatment can be made available to the wider community.
Researchers often explain clinical trials using specific terms like ‘endpoints’. This refers to the goals the trial is trying to measure, such as:
Overall survival – how long someone lives after diagnosis or starting treatment
Progression-free survival – how long someone will live without the cancer worsening or progressing.
Cancer shrinkage – whether the cancer has decreased in size.
Quality of life (QoL) – a person’s overall wellbeing, including physical, emotional and social factors that affect their daily life and happiness. These may also be referred to as Patient Reported Outcomes (PROs) or Patient Reported Outcome Measures (PROMs).
These factors help researchers decide if a treatment is effective.
Sometimes the treatment may not work better than the current standard treatment. These results can still be helpful for doctors to learn more about ovarian cancer and improve future treatments.
Factors that affect how quickly the researchers can gain trial results can include:
the type of cancer being tested
the size of the trial
the type of trial (prevention, treatment, screening trials)
how long it takes to find the right amount of people to take part in the trial
how long treatment lasts
Trial results can take anywhere from one year to 10 years, but it is usually between 2 and 5 years.
In later-phase trials (phases 3 and 4), which are generally large trials, recruitment can take a long time and so the results take longer to appear.
Trials looking at screening for a cancer or prevention can take years to gain results as a long time is needed to see which groups of people go on to develop cancer.
How do I find results of clinical trials?
If you want to find out the results of a clinical trial you took part in, first ask your treating doctor. They should be able to find the results for you and provide a simple summary of the outcomes.
Otherwise, an excellent place to start is ClinicalTrials.gov {LINK www.clinicaltrials.gov], which is an American website providing details on worldwide clinical trials, including those in Australia, and their results. You can search for trials and their results by disease type, location and more.
If you live in Australia and want to find clinical trial results for ovarian cancer, there are several other reliable resources you can use:
ANZCTR (Australian New Zealand Clinical Trials Registry) [LINK www. anzctr.org.au]
A registry of clinical trials conducted in Australia and New Zealand. It includes trial results and information about ongoing studies.
Australian Cancer Trials [LINK australiancancertrials.gov.au]
Detailed information on cancer clinical trials available in Australia, including results when available.
Cancer Council Australia LINK WWW.cancer.org.au]
Information about clinical trials and research updates relevant to Australians, including trial results.
PubMed [LINK WWW. pubmed.ncbi.nlm.nih.gov]
A database of health research that includes clinical trial results. You can search for specific studies or cancer types.
Scientific journals
Many provide reliable, peer-reviewed information on the latest cancer treatment research and clinical trial outcomes. Some journals offer free access to selected studies, while others require a payment. If you are linked to an Australian university or library, you may be able to access articles for free.
A note on scientific journals:
Not all journals are reliable and peer reviewed. Some contain poorly researched and poorly evaluated information. If you find an article about a clinical trial and want to verify the information, please talk to your doctor. See this article about predatory journals, a really big problem.
Reputable cancer journals where you will find trial results include:
Research papers are usually not written in plain English. Most people find the medical and scientific terms hard to understand.
Some websites offer a simplified summary of the published papers.
A couple of terms that may help you understand things better:
Peer review is when experts in the area being studied read over a research study before it is published.
They check if the methods used and results appear valid and trustworthy. This ensures the researchers are presenting a well-designed study and their conclusions are based on solid methods.
Systematic review is when researchers carefully analyse and compare the results from many different studies on a single topic.
A systematic review helps to show which treatment works the best. You can read more about systematic reviews at the Cochrane Collaboration.
You can also ask your treatment doctor or specialist nurse to help you understand trial results. Or call our Helpline on 1300 660 334 and speak with one of our ovarian cancer nurses. The helpline is available Monday to Friday, 9 am – 5 pm. You can also email Ovarian Cancer Australia at support@ovariancancer.net.au.
How do I get updates on Clinical Trials?
Many women want to know about clinical trials but don’t have the time or energy to be constantly researching which trials they might be eligible for. However, they don’t want to miss out on treatments that could potentially help them. If you have questions about clinical trials and would like to be kept up to date, you can access support in the following ways.
Ask your specialist doctors
Your own specialist doctor is the only person who can safely say whether or not you would be eligible for a specific trial. They have the medical knowledge and specific information about you and your type of cancer. If they think you are eligible they are the only person who can refer you to the doctor or cancer centre running the trial.
I have printed some of these off [trial information] and taken them in [to my appointment] and said, “What about these?".
Sign up for email newsletters
You may find it helpful to sign up for email newsletters from organisations that are involved in clinical trials. For example:
You would not get an individualised, email with tailored information for you, but it would allow you access to current and up to date trials information.
Contact Ovarian Cancer Australia Helpline
Call 1300 660 334 to speak with an ovarian cancer nurse or email support@ovariancancer.net.au. It is a direct telephone and email connection for people impacted by ovarian cancer, their partners, family and friends to the support team at Ovarian Cancer Australia. Talking to one of our nurses about clinical trials is often a good place to start if you are unsure about going to your doctor first.
While our nurses are not able to refer you onto a specific trial, they can provide you with up-to-date information on trials and research going on and can help you find trustworthy online information.
Join an Ovarian Cancer Australia support group
Ovarian Cancer Australia holds a number of monthly face-to-face and online support groups for people impacted by ovarian cancer. Joining a support group of other women with ovarian cancer can give you a valuable opportunity to share your experience of navigating treatments and decision making.
I've kept myself informed because I'm part of the ovarian cancer Facebook page and the other [women] have linked me to the international [trial information].
A support group is usually a safe space which allows women going through ovarian cancer to share experiences with treatments. It can help you stay connected and updated on the latest research, trials and resources, which allows you to make informed decisions about your care and treatment.
More information: Support groups and networks
Consider an Ovarian Cancer Australia Teal Support Nurse
The Teal Support Program is a free telehealth supportive care program helping women with ovarian cancer throughout their diagnosis, treatment and beyond. The main aim of the program is to provide continuity of care. You have contact with the same nurse when you are not regularly seeing your treating team and focus on areas of care that matter to you.
I did have a Teal [ovarian cancer telehealth] nurse for a while … I didn’t even realise that she may have been an access point for information about clinical trials.
