Frequently Asked Questions

General Questions

How is this trial different from traditional research studies?

Research studies usually require patients to travel to a clinical center, which can be several hours drive or even a flight away from home. this trial makes it possible for patients to participate in research without leaving their local area. Patients can continue to get regular care from their local doctors and don't have to disrupt their lives to participate.

Who can join?

Those who meet certain criteria can join this trial

What are the benefits to being in a trial? 

There can be many. Learn more about why it is important to participate in research.

Who pays for this trial?

This trial is supported by the Vasculitis Clinical Research Consortium (VCRC) and funded by the National Institutes of Health (NIH), the Office of Rare Diseases Research - National Center for Advancing Translational Sciences (ORDR/NCATS), National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

The TAPIR trial team will reimburse each eligible participant with a $50 gift card once the team receives your medical records. This gift card will help offset any charges you may incur for requesting your medical records.

Who would be in charge of my care while I am in this trial?

Your current doctor will remain in charge of your care. If you have any questions or concerns about your illness, you need to contact your doctor.

If you have questions about the TAPIR trial, you can contact the TAPIR trial team

If you are having a medical emergency, please dial 911.

Can I quit the TAPIR trial?

Participation in research studies is completely voluntary. You may drop out of the trial at any time.

Deciding not to participate in a clinical trial does not affect your ability to receive care by any doctor.

Would there be any follow-up after the clinical trial?

You may be contacted by a member of our TAPIR trial team who will ask you some questions about your participation in this trial. 

If you are selected for this follow up interview – someone will contact you approximately 1 week once you have completed the trial. This interview should take approximately 30 minutes and it will evaluate the effectiveness of this new trial approach.


Eligibility

How do I know if I am eligible for this trial?

Find out if you are eligible to join.

What if I am taking more than 20 mg of prednisone per day?

Find out what you can do to prepare for the TAPIR trial

What does "remission" mean?

Remission is defined as having no signs or symptoms of active GPA.

Infections, other diseases, and medication side effects may mimic the symptoms of active GPA. Your local doctor can assist you in distinguishing the cause of different symptoms.

Can you enroll if you are not in remission?

No, in order to enroll in this trial, you would need to be in remission at the time of enrollment.

Can you enroll in this trial if you are taking prednisone for another condition?

No, if you have another health condition that requires you take prednisone orally (by mouth) on a daily basis, you cannot enroll in this trial.

Can I still participate if my doctor says no?

No. In order to participate in the TAPIR trial, your doctor will need to agree that the assigned prednisone dose (either 5 mg or 0 mg per day) is appropriate for you.

I think I have GPA, but I haven't been officially diagnosed. Can I still join?

No. In order to participate, your doctor will need to agree that your diagnosis of GPA meets the established diagnosis of granulomatosis with polyangiitis (GPA).


Participation Questions

Should I change my diet?

No dietary changes are necessary for the TAPIR trial. Any questions you may have about your diet you should discuss with your doctor.

What do I do if I get a cold/flu?

The common cold and the flu are viral infections. You should always check in with your doctor in case you get a cold or the flu.

Can I take non-steroidal anti-inflammatory drugs (NSAIDs)? (ibuprofen, Celebrex, etc.)

Before taking NSAIDs or any over the counter drugs you should check with your doctor first.

Can I receive vaccinations?

Discuss any vaccinations you may get with your doctor. They will advise you on what vaccinations, if any, are appropriate for you.


Security

Do you share my information?

Demographic information such as location and disease diagnosis is used by the TAPIR trial team. This information assists us in communicating with people with rare diseases.

This information is also used to help us:

  • design better clinical research studies on rare diseases
  • open more study sites around the world – making research available to more people.

How is my information kept safe?

All information submitted to us is stored in a secure computerized database at the University of South Florida.

Personal identifying information (such as your name, addresses, telephone number) will never be given to anyone without your permission.

Ready to join TAPIR?

  • For patients with diagnosed GPA
  • Participate from anywhere - online!
  • Must currently be in remission
  • Continue to see your own doctor

*other conditions may apply. Learn more

Questions Contact our Study Coordinator