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A 10 -step guide to find a study that works for you

It is a well -known fact for anyone who has already tried to sail in the world of clinical cancer trials: finding a search test that suits you is not easy.

The hard truth is that such useful clinical trials are precious, there is no single and up -to -date register of the government, non -profit organizations, the pharmacy company, the hospital and cancer funded by the university medical center.

“It’s a kind of Far West there,” said Andrew Poklepovic, MD, associate director of clinical research at Virginia Commonwealth University Massey understanding Cancer Center in Richmond.

This means that, although doctors and institutions can help, it is often up to potential participants to launch the process at least by scanning a multitude of websites for trials that seem to be a good choice.

Why bother?

Because clinical trials can save lives.

“I know living people today because years ago, they have taken test therapy what has become the norm of care now,” said Dr. Poklepovic. “This is why I encourage people with cancer or risk developing cancer to search widely and often for clinical trials to join.”

Here are 10 steps to help you find a test that can be a good match:

1. Understand the types of tests available

“There are a wide variety of clinical trials that are based together on a wide range of people,” said Mark Fleur, PHD, director of emerging science for American Cancer Cancer Cancer Action Network. Some trials may want people who must be treated for a specific cancer stage, for example, while others are more interested in preventing cancer in high -risk populations.

Here is the drop in the most common types of trials:

  • Prevention tests Often recruit people with a high risk of cancer to see if changes in lifestyle or other approaches (such as drugs, supplements or vitamins) reduce this risk.
  • Therapeutic interventional tests Test new treatment for cancer or treatment techniques, such as devices, medicines, radiation and surgery.
  • Non -therapeutic tests are intended to observe cancer without intervention. The objective is to understand the disease and the factors that influence its occurrence.

2. Know your “performance status”

This is a measure of your operation and your mobile. Some trials will take into account the type of form that potential participants appear as part of their criteria to admit that people are trials. There are several ways to classify the tests. Here is a common scale used to show how the performance is determined:

  • Category 0:: You are fully active, as you were pre-diagnosis. You have no symptoms of cancer.
  • Category 1:: You are active and can undertake light household work and office work. Painful physical activity is however difficult.
  • Category 2:: You are standing and about half the day. Although you can tire yourself, you can take care of yourself – but can’t work.
  • Category 3:: You cannot work or take care of yourself. You are in a bed or a chair more than half of the day.
  • Category 4:: You are in a full-time bed or chair and you cannot worry about yourself.

“Most clinical trials accept people in categories 0 and 1, some include 2, while a handful of support care tests will be based on category 3,” explains Poklepovic.

Why are the tests reluctant to admit people in categories 3 and 4? “These people can be too sick or fragile to tolerate test treatments or to follow test protocols,” explains Poklepovic. In addition, the more fragile someone, the more difficult it is to determine if this person has not done well because of treatment or because of their physical condition, he said.

3. Decide to what extent you are arranged or capable of traveling

The trial that meets your needs may not be local. A recent report has revealed that most clinical trials are less than 60 miles from urban areas, wealthy suburbs or university cities. But if you live in a more rural area, you will probably travel more than 60 miles. Research has also revealed that “many more tests open in urban areas than in rural areas,” explains Dr. Fleury.

The situation was worse for black Americans and other historically marginalized groups, he says, in part because “pharmaceutical companies did not dirty clinical trials in institutions that serve these communities”.

This is changing as companies and clinicians are pushing to diversify the participation of research in order to better guarantee that the results can be applied to wider populations. Some clinical trials may even offer a refund for travel and accommodation.

4. Tell your doctors that you are open to reach clinical trials

Many people assume that there is no test for them if the doctors do not raise the subject. The reality is that all doctors do not think they are asking, and some may presume – for all kinds of reasons – that you are not interested. But if you place it on your mutual agenda, your doctor can help you advise you on what is available and guide you regarding the right time to reach clinical trials.

5. Find a health professional to help

Beyond your doctor, the best assistance can come from other health professionals from your treatment center, as they will know the medical jargon, the protocols and how to fill out a detailed health history form. If you are unable to find someone in the institution in which you go, Poklepovic advises to ask a friend or a member of the experienced family Google (“adolescents can be excellent in this field”) to search for the academic medical center or the nearest cancer practice group, where there is probably someone who can help. You can also contact clinical trial search services (such as those listed in step 7), many of which provide experienced clinical trials that can guide you throughout the process.

6. Have information on your overall health and cancer

Remember to use the National Cancer Institute cancer control list to help collect all specific cancer information you have. In addition to performance status, you will at least need to know the type and stage of cancer to search for a clinical trial relevant to you. The specific name and the cancer subtype may also be necessary to find out if you are a good choice.

More recently, clinical trials tend to be open to people with cancer who have a specific expression or molecular mutation. For example, researchers can seek breast cancer with a positive HER2 expression or lung cancer without the mutation of the epidermal growth factor (EGFR).

7. Research databases

Bookmark or print the protocols and the conditions for the eligibility of the studies that interest you. Locate locally, regionally and, depending on your ability and your desire to travel, in other states. Consider checking with renowned advocacy groups or foundations supporting cancer research you have, because they can be linked to the tests. Here is also a well -known database list:

Government trial funds

Third -party trials

Specific disease and disease -based tests

8. Check your eligibility

Each trial can have very specific eligibility criteria. This will include if they are looking for a healthy volunteer or a person with a specific condition. They can look at your:

  • Age and performance statement
  • Type and stage of the disease, if applicable
  • History of treatment – what treatments you have undergone, if applicable
  • Other health problems or conditions, especially if you take medication for something else

9. Make your hand to the test team with detailed questions on the study

If you have found some trials you want to join, but you don’t know if they are a good choice, contact the trial teams listed for clinical trials to help you decide. You don’t know what to ask? The National Cancer Institute offers a large list of questions on, for example, your costs or your rights as a participant. Some other current questions that you could ask include:

  • In what phase is this study? Phase 1 is the first phase and can request frequent visits, but these tests often offer the latest treatments.
  • How long does the wait last before starting treatment in the clinical trial? You can use this information to plan in advance.
  • Are there limited processing points? This would affect your waiting time.
  • How could the essay affect daily life for me and my family?

10. Make an appointment with the clinical trial team

At this point, the study team can invite you to come for a screening visit to make sure you are eligible. This may involve a physical examination or additional tests.

You will then receive information on the intention of the study and its risks and advantages. If you are accepted and decide to continue the trial, you will be informed to sign, to show that you have been completely informed of the risks and that you give them permission to treat you.

The point to take away

  • This can be an enriching experience to participate in a clinical trial. Almost all cancer treatments that are standard today were once available only thanks to a clinical trial. Participation in a clinical trial can not only give you the opportunity to get the best possible treatment, but also help many other people with cancers similar in the future.
  • It can take time to access all the information on available tests. But there are many online resources that you can use to start your search.
  • Tell your doctor that you are open to a clinical trial and find out how it could affect your current treatment. Ask your doctor to relevant medical history, so that you have it at hand when you ask for a trial.
  • When you find a test that seems to be a good adjustment, contact the trial team with a list of your questions on the risks and the advantages of the study.

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