“One of the key tools that saved my life was the US Government Website www.ClinicalTrials.gov. It was through this website that I gathered much of the relevant information that was necessary for me to learn everything there was to know about potential treatments, the many drugs and chemotherapies used in treatments for my disease, and the names and contact information for many of the top doctors and research scientists investigating treatments for my disease both domestically and internationally.” Eric Drew
Many patients will search their disease name under clinical trials, and quickly conclude that because it may seem that none of the trials apply to them or are not currently recruiting, there is no value here. Big mistake! Clinicaltrials.gov is an excellent resource for educating oneself and it is crucial that a patient or their advocate understand every term, every drug listed, and get to know every researcher’s name listed under all the trials relevant to the disease in question.
STEP BY STEP:
- Go to www.ClinicalTrials.gov on your internet browser.
- Do a search by typing in the name of your disease in the “search” field as specifically as possible.
- Prioritize the list of clinical trials before you, first focusing on the “RECRUITING”, “ENROLLING” and “ACTIVE” trials. Click on the link to a specific trial.
- Evaluate whether or not this trial may be a treatment possibility for you by scrolling down and checking the qualification criteria listed. (see sample trial)
- If you do think that you qualify for this trial, contact the coordinator immediately. (see sample)
- If not, pull all relevant and useful information from this trial. (see sample Trial)
- MEDICATIONS / CHEMOTHERAPIES It is extremely important for you to know of and about all medications and chemotherapies that are relevant to the treatment of your disease, as they are relevant to your treatment, and maybe your survival. (see sample)First, Create a comprehensive “Medication Log” to list all relevant medications and drugs used in the treatment of your disease, then add all medications listed in every trial that you search to your comprehensive “Medication Log”. You can create this log by simply writing a list on a sheet of paper or in your “Patient Journal”, using our sample Medication Log in word document form, or for more technically savy people you can create an Excel Spreadsheet (see sample Medication Log Spreadsheet) to track relevant medications.
You may also want to break down your list into categories. For example: “Chemotherapies”, Kinase Inhibitors, Antibiotics, Anti-fungals, Anti-virals, etc etc.”
Other important information to collect about medications or therapies includes:
- The Manufacturer and their website link – as well as links to information on the specific medication
- Contact names at the manufacturer, especially the name of the designated clinical trial coordinator for this medication
- Contact information such as telephone number / email etc.
- Notes on information you discover and questions for your doctor
- IMPORTANT CONTACTS / TRIAL COORDINATORS All of the contacts listed in any clinical trial are extremely important to keep track of because these are the top doctors, research scientists, and investigators dealing with your specific disease.First, create a comprehensive “Medical Contacts List” of all the medical professionals that could possibly be of value in the treatment of your disease. Then add all the contacts listed in every trial that you search to your “Medical Contacts List”. You can create this list by simply writing a list on a sheet of paper or in your “Patient Journal”, using our sample Medical Contacts List in word document form, or for more technically savy people you can create an Excel Spreadsheet (see sample Medical Contacts Spreadsheet) to track relevant medications.
You may also want to break down your list into categories. For example: “Treatment Physicians”, “Nurses and Patient Coordinators”, “Pharmaceutical Company Contacts”, “Non-Profit and Support Contacts” etc. etc.
- HOSPITALS / MEDICAL CENTERS / TREATMENT FACILITIES In evaluating all of your treatment options, it is very important to evaluate and track all of the leading facilities that are involved in the treatment of your disease. Even if a specific hospital does not have the newest most advanced treatment for you at this time, they may have in the future. Having a list of these facilities and the relevant contacts can be crucial in making sure you are getting the most effective treatment possible.First, Create a comprehensive “Hospital / Treatment Center Log” to list all relevant treatment facilities that are actively involved in the treatment of your disease, then add all facilities listed in every trial that you search to your comprehensive Hospital / Treatment Center Log. You can create this log by simply writing a list on a sheet of paper or in your “Patient Journal”, using our sample Hospital / Treatment Center Log in word document form, or for more technically savy people you can create an Excel Spreadsheet (see sample Hospital / Treatment Center Spreadsheet) to track all relevant treatment facilities.
You may also want to break down your list into categories. For example: “Major Medical Centers”, “Local Hospitals”, “Medical Groups and Private Practices” etc. etc.
Repeat this process of pulling out all relevant data from each trial until you have covered all trials listed under your disease search.Then, repeat the initial search as many times as necessary using all other variations of the disease name, and including other relevant search criteria such as locations, specific medications, and any other relevant terms you discover in your review of specific trials.It is important to regularly repeat these searches weekly to ensure that you are aware of any new trials that may be posted. Much of the information you collect in your initial search will be repeated and redundant, so once you have created comprehensive list and logs there should not be too much new information found in subsequent searches.The secondary objective here is to be aware of all new clinical trials and treatments relevant to your disease, to know who the top medical professionals are who are treating your disease, and to know where these newest and most advanced treatments are being done.The main objective here is to be proactive with this information and make sure that you are choosing the most advanced, most current, and most aggressive treatment possible!!