Tuesday, February 5, 2019

How to find a clinical Trial (2019 Update)

The decision to join a clinical trial is a personal one, which I believe is best made between the person with type-1 diabetes (or parents) and their doctor.  However, I know that some type-1s don't have regular endocrinologists, and also some doctors don't tell their patients about available trials.  Therefore, I've put together this blog on how to find clinical trials, so that people with type-1 diabetes, who want to, can find trials to discuss with their medical team.

The web pages discussed below have a wide range of goals, so you will find trials aimed at curing, preventing, and treating type-1 diabetes, and also the complications caused by type-1 diabetes.  These trials also include many different methods: new drugs, new devices, diets, psychological treatments, surgeries, etc.

If you know of any web site useful to finding T1D studies, which is not on this list: please send it to me, so I can add it!

Web Sites That Search For Clinical Trials

JDRF has a good web page to find clinical trails based on age and location: https://www.jdrf.org/research/clinical-trials/
(This tool finds all type-1 diabetes studies, not just those funded by JDRF.)

There is also a blog created by Jennifer Schneider which has a great map to help you find type-1 clinical trials: https://type1trials.blogspot.com/ 
The map by itself is here:

Using This Blog

When I blog about a new clinical trial, I usually link to their recruitment page, and include the names, emails, and phone numbers of the recruiters.  This information is usually with the first posting announcing that they have started recruiting.  I also include a link to the Clinical Trial Registry (often an "NCT" or "ISRCTN" number.  By following this link, you can often find even more information on the trial.  So you can search through this blog to find interesting clinical trials near you.

Other Organizations To Search

If you want to do more searching on your own, then you can check out the following web sites:

The Immune Tolerance Network (ITN) is a very interesting organization, which I view as part of the "infrastructure" of diabetes research.  They help researchers organize and run clinical trials aimed at stopping autoimmune attack, and similar subjects within the immune system.  They cover research into type-1 diabetes, and also related autoimmune diseases.  At any one time, they usually have a dozen or so studies going on, and a couple are recruiting all the time.

Because ITN runs a network of doctors who cooperate in clinical trials, their trials often recruit at many different sites all over the US (and sometimes the world), so you have more chances to enroll.  Their studies are more likely to be available near you.

The ITN's Home Page: https://www.immunetolerance.org/

Official Clinical Trial Registries

All clinical trials should be registered at some official web site, so these are the largest and most diverse places to look for a study.  In general they contain a lot of information, but are clunky to use. They are more designed for research professionals, than random people looking for a trial.

You can search for phrases like "type-1" and "diabetes" and limit your search to studies that are recruiting right now, and even by location where they are recruiting.   Personally, I've found the JDRF site has the same information and is much easier for a patient or parent to use.  But the FDA site has more info, so if you find a trial using the JDRF site, you can look up the same trial on this site, and learn more about it.

This is the official US FDA registration site for clinical trials.  It covers just about everything in the US, and many trials not done in the US are registered here as well.

This is the United Nations's official registration site for clinical trials which covers the whole world.  Searching here will find trials registered in individual country's registry databases (all the sites listed in this section, plus many more).

This is the European Union's official registration site.

Australia and New Zealand

Japan's clinical trial registry (in English).

Note: China has a clinical trial registry in English as well, but I could not get it to work:

Looking Near You

If you are near a major university or diabetes research center, you might want to "reach out" to them.  I know that UC San Francisco, Stanford, The Barbara Davis center at University of Denver, DRI (in Miami), University of Florida at Gainsville, the Joslin center and Harvard (both in Boston) are all doing multiple studies.

Google can help you find the recruiting web pages for these studies, by searching for the name of the University and following it with "endocrinology clinical trials".

Everyone Is Near The Web

Finally, If you are more a "do it yourself" person you might want to look at the Facebook group "Prevent Autoimmune Disorders".
This group is crowd sourcing a test of Vitamin-D and Fish Oils as a preventative.  You can read the information in this group, and decide weather or not to participate.

Joshua Levy 
publicjoshualevy at gmail dot com 
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF, JDCA, or Bigfoot Biomedical news, views, policies or opinions. In my day job, I work in software for Bigfoot Biomedical. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.