Wegener's Granulomatosis
What is Wegener's Granulomatosis?
Wegener's Granulomatosis is a rare form of vasculitis characterized by inflamed blood vessels that limit blood flow to the effected organs and destroy normal tissue.
| Name | Description |
|---|---|
| Nose symptoms | Pain and stuffiness in the nose |
| Hearing loss | Hearing loss |
| Conjunctivitis | Conjunctivitis |
Last updated 6 Jun 2009, 10:50 PM
6 Jun 2009, 10:50 PM
I have had WG for 5 years now on Methatrexate inj, Bactrim, and of course prednisone. Recently I was diagnosed with Invasive Ductal Carcinoma. I had a Lumpectomy (left breast) and now I am preparing for Aftercare Treatment. I will have radiation, Arrmidex, and inj Zometa. My Oncologist has asked me if I feel I need chemo and it is my decision one way or the other. Has anyone out there had both diseases at same time already on maitaninace Chemo and now need to decide whether to go on a cytoxin???? What meds were you and what decisions did you make?? I would value your opinion and sharing of this serious matter. Judi
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Adjuvant Therapy
Created by mucjud13 | Last updated 6 Jun 2009, 10:50 PM
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