HALIFAX – A database critical for studying and tracking patterns in juvenile arthritis patients across Canada has received much-needed funding for the next three years, but there are concerns about what will happen to it in the long term.
Last week, the Arthritis Society committed to giving $300,000 over the next three years to the Registry in Arthritis in Canadian Children. The money will go toward the management, administration and technical support of the registry. Without the injection of cash, the registry would have been shut down. Federal funding will also soon expire.
Since the database was launched in 2005, 1,500 children have been enrolled nationally. IWK pediatric rheumatologist Dr. Adam Huber said 165 of those are from the Maritimes.
The database tracks a variety of features such as how old the children were when diagnosed, their blood work, what their physical function is and how much pain they are in. It also keeps information on what type of treatments the children use, what their outcome is and what limitations they may face.
Dr. Huber said the database has produced results, patterns and trends over the last six years, since data first started being collected. That information has been invaluable for patients and their families, but more long-term data is needed.
“We’re already saying some really important things. Unfortunately if we don’t actually have ongoing funding, whether from the Arthritis Society or from other sources, we run into the situation where we’ll be stopped. We can’t go further,” he said.
“If we don’t continue to follow [patients], we’re going to lose that amazing information about what happens to kids five years down the road, 10 years down the road or 20 years down the road.”
Arthritis data is important for patients
Nikolas Harris, 21, was diagnosed with juvenile arthritis just before he turned two years old.
The Cole Harbour man is the only one in his family with the chronic condition and said it was “scary” learning to cope with it.
“You don’t really know what’s going to happen or how the disease will progress. It’s very much a roller coaster. You have really good days and you have really bad days,” he said.
He works with rheumatologists and doctors to keep his arthritis under control and keeps his condition in check with the help of physiotherapy and medications.
Harris said the registry would have been helpful for him and his family. It did not exist when he was diagnosed and as his family learned to adjust to life with arthritis.
“I think it would have probably given us a lot of security. It would have put an importance on knowing these treatments work and knowing there’s not as much to worry about,” he said.
“Ultimately the more we know about it, the better we can treat it or people can live well with it.”
Harris said he is comforted to know more funding has been secured for the national database for at least the next three years.
“The fact it’s funded for three more years provides that much more research and that much more ability to help youth, adults or everybody seek treatment and be able to track their own progression within their disease a lot more accurately,” he said.
“If there’s no funding then there’s no research, and if there’s no research then there’s a poor quality of life.”
Arthritis Society sees value in the database
Dr. Huber said the database may provide some comfort and reassurance, at least short term, for patients and their families after they first receive the diagnosis.
“You want to know what’s going to happen to your child as a teen, as an adult, what kind of work can they do, how is [their arthritis] going to impact their ability to have certain jobs, go to university, play sports and have a normal life,” he said.
“Those are questions families ask and those are questions we don’t have really good answers for.”
Huber said the registry has the potential to allow pediatric rheumatologists across the country to follow their patients long-term.
“We [could] say, if your child has arthritis with these characteristics, the chances of going into remission are a certain number, the chances of being off medication, the chances of having certain complications. All those pieces of information we can hopefully answer but we can’t answer that unless we have the much more long-term follow up in 10 or 20 years,” Huber said.
“Right now, it’s relatively rudimentary what we can say. We know there are a variety of things that can happen but it’s difficult to say what’s the likelihood of that.”
Huber said the registry can provide doctors with outcomes and their probabilities, which can impact how patients are treated and cared for.
“If we know from the beginning that a child has a very high chance of bad outcomes, we may be much more aggressive up front and move more quickly to very aggressive medication versus a child who we know is very likely to have a very, very good outcome,” he said.
Susan Tilley-Russell, the executive director of the Atlantic region of the Arthritis Society, said the registry is advantageous for everyone.
“If we didn’t have this database then we wouldn’t be able to watch those trends, we wouldn’t be able to provide researchers with quick access to pools of patients that then can be watched,” she said.
Tilley-Russell said the Arthritis Society has only committed funding for the next three years but she hopes the registry has a long-term future.
“Our goal would be to see this registry continue because we do see great value in it. We would like to see this registry funded for as long as possible,” she said.
Comments