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Researchers need your help to determine the best way to invite patients to participate in their study!

The study will be on the risk of damage to vision related to taking hydroxychloroquine (HCQ) or chloroquine (CQ) in Canadians living with lupus and rheumatoid arthritis.

The research team at Arthritis Research Canada and the University of British Columbia want to do research to:

  • Accurately determine the risk of damage to vision related to taking HCQ or CQ in Canadians living with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA)
  • Provide annual vision testing to approximately 3,000 patients with SLE or RA who have been taking HCQ or CQ for more than 5 years

The research team will use a state-of-the-art vision testing method that can detect any signs of damage to vision at an earlier stage before the damage is irreversible. The researchers need your help in designing this research project. They want your opinion about the best way to invite patients to participate in this study:

  • Option 1
    The research team will send a letter to the patients who have SLE or RA and have been taking HCQ or CQ for more than 5 years. The letter will ask the patient to ask their doctor (family doctor or rheumatologist) to send a referral to see an ophthalmologist for the vision tests.
  • Option 2
    The research team contacts the family doctor or rheumatologist directly and requests that the doctor tells their patients with SLE and RA about the study and sends a referral to the ophthalmologist.

Click on this survey link to select your preferred option.

More information about damage to vision related to taking HCQ and CQ

Hydroxychloroquine (HCQ), also known as Plaquenil, and Chloroquine (CQ), are inexpensive anti-malarial drugs commonly used to manage symptoms of systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) because it has been shown to prevent “flares” (episodes when symptoms worsen), prevent disease progression, and help people live longer.

Most drugs have some unwanted ‘side-effects’, such as causing nausea. Research shows that taking HCQ or CQ for long period of time can affect vision, and if not detected on time, it may lead to damages to a patient’s vision. It is recommended that people taking HCQ or CQ for 5 years or more should have their vision tested by an ophthalmologist every year using new technology that detects early changes before they are irreversible.

A recent study by Arthritis Research Canada found that about 40% of those who should have had their vision tested had not had the test within the past 5 years – it was even worse (almost 70% didn’t have their vision tested) if they were not being cared for by a rheumatologist.