The CSSA views the creation of a registry for patients with Churg Strauss Syndrome to be of the utmost importance in facilitating research into our disease. The CSSA urges all CSS patients to register and has provided a direct link to the VCRC patient registry. Here are some things you might want to know about the registry:
| Registering is completely anonymous. | |
| Your rights and privacy are strictly guarded. | |
| You can always drop out of the registry. | |
| There is no charge to patients and the Registry is not for profit. |
These are the reasons registering is so important:
| Our disease is very rare and it is difficult for researchers to find subjects for clinical trials. A patient registry will create a pool of CSS patients “ ready to go”, making research easier. | |
| Numbers count. If a lot of CSS patients join the registry, it might become apparent that more people are afflicted with CSS than was previously known. Knowing just how many CSS patients there are might help CSS achieve greater recognition and importance in the research world. | |
| You will have a greater chance to participate in clinical trials. | |
| We will feel empowered as individuals and as a group, knowing that we are doing something that advances an understanding of our disease. |
Follow this link
to the VCRC patient registry.
Other medical institutions and research facilities might
have their own patient registries. You can find more information
about them either in the Focus
on Research articles or by following the links in the
Helpful Links or Research
Articles sections of this website.
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