There are 7000 rare diseases, most of which lack treatments, or effective treatments. The purpose of todays Blog post is to give you some information that is very important.
Most patients with a rare disease will need to take part in at least one clinical trial, if they are to see the development of a treatment for their rare disease in their lifetime. Where should you look to find information on ongoing clinical trials that you could take part in?
For rare disease patients anywhere around the world, the US government website www.clinicaltrials.gov is an invaluable resource. Please make a careful note of it. You can find detailed information about many clinical trials ongoing in many parts of the world on this website. Any company or institution that has an Investigational New Drug (IND) application in effect at the Food and Drug Administration (FDA), must submit information on ongoing clinical trials to the www.clinicaltrials.gov website.
I will provide a step by step process that you can follow to use this website effectively to find ongoing clinical trials for your rare disease. You can even find clinical trials by your Country, State and even City. The website may not be intuitive to use, so hopefully this stepwise process will be helpful.
Step 1 Open up a new internet browser
Step 2 Type in www.clinicaltrials.gov
Step 3 Insert your disease name in the search bar
Step 4 You will see a list of all clinical trials ongoing, or perhaps completed in your disease area.
Step 5 Note the clinical trials that are completed. Review these for interest.
Step 6 Note the clinical trials that are still ongoing, and which are still accruing patients
Step 7 Look at the inclusion criteria for these clinical trials. Ensure that you meet all of these criteria. If you do, you can be considered for participation in the clinical trial.
Step 8 Look at the exclusion criteria. Identify any criteria that indicate that you cannot be considered for participation in the clinical trial.
Step 9 Make a list of the clinical trials that you may qualify to take part in
Step 10 Contact the persons provided for the clinical trial. Express an interest in finding out more about the clinical trial, and potentially being considered for accrual into the clinical trial.
We wish you well as you use this tremendous resource to find clinical trials that may be recruiting patients for your disease or your child’s disease. Many clinical trials for rare diseases are ongoing in several countries. Rembember that you can search by country, State and even by City.