Funds have been approved for a national health database designed to keep track of people living with neurological conditions.
This could mean better research opportunities to help those living with Parkinson’s disease and multiple sclerosis.
Late last month, President Donald Trump signed into law the Labor, Health and Human Services, Education, and Defense omnibus spending bill.
This measure provides funding to the Centers for Disease Control and Prevention (CDC) for the National Neurological Conditions Surveillance System, which was authorized by the 21st Century Cures Act in 2016.
“[This] is important for research,” said Dr. Jaime Imitola, the director of the progressive multiple sclerosis multidisciplinary clinic and translational research program at The Ohio State University Wexner Medical Center.
Imitola explained that databases are important as they allow for many large research efforts to be done from a variety of different places.
“But, the most important aspect of databases is how to harmonize all of them,” he said.
“Within a health database lies central known patient information, identifiers, analyzed data that could be awesome,” Imitola told Healthline, “but the question is how to coordinate the data, how it is handled, and who has access.”
Countries around the world are using national health databases for research in multiple sclerosis (MS).
These MS registries are helpful for studying diseases and their symptoms in large populations.
They are also useful in monitoring the long-term outcome of disease-modifying therapies.
Proponents say the systems help improve the understanding of and knowledge about MS.
In addition, they can assist the government and relevant parties to make informed decisions about MS.
In 2013, the Swiss MS Society decided to initiate and fund the Swiss Multiple Sclerosis Registry.
Other national databases include the Danish Multiple Sclerosis Registry, the Norwegian Multiple Sclerosis Registry and Biobank, the Italian Multiple Sclerosis Database Network, the NARCOMS Registry for Multiple Sclerosis, and the Multiple Sclerosis Registry in Germany.
“There is emerging idea that you need more people to do more things,” Imitola said.
In 2001, the Sylvia Lawry Centre for Multiple Sclerosis Research started the world’s largest database of patient information. It includes more than 20,000 patients and the equivalent of more than 81,000 patient years. It continues to grow.
“The other spectrum to consider is the heterogeneity, or uniqueness, of one’s MS,” suggested Imitola.
The ailment is considered a snowflake disease in which no two people with MS present with the exact same symptoms.
“In order to look at the diversity of those living with MS within the landscape of the disease, we need lots of people,” said Imitola. “Then we can look at the individual person for treatment for their MS.”
Another growing area of research is in patient reported outcomes.
“These studies too could use more people,” said Imitola.
Some consider the new database a game changer.
“Funding for the Surveillance System is a culmination of over a decade of work by the Society, our partners at The Michael J. Fox Foundation, and the neurologic community,” Bari Talente, executive vice president for advocacy at the National Multiple Sclerosis Society, said in a statement. “This new National Neurological Conditions Surveillance System will provide important demographic data on neurologic conditions like MS and give us a better understanding of their impact on Americans.”
The authorization and funding of the system have been longtime priorities for both the National MS Society and the Michael J. Fox Foundation.
“Establishing a national data collection system is a game changer for researchers working on scientific breakthroughs and for families impacted by a neurological condition,” Ted Thompson, JD, senior vice president of public policy at The Michael J. Fox Foundation, said in a statement. “Our hope is that the critical insights gathered from this demographic information can illuminate new pathways toward cures for the millions who live with conditions like multiple sclerosis and Parkinson’s disease.”
“Having a database for any condition is helpful in terms of collecting epidemiologic and demographic data that can help drive research questions and clinical care,” Dr. Barbara Giesser, professor of clinical neurology at the David Geffen School of Medicine at the University of California Los Angeles and clinical director of the UCLA MS program, told Healthline.
Candidates for the database may be concerned about privacy.
In the United States, patients are protected under the HIPAA Privacy Rule. But, as more health information is stored on computers, this may cause a risk in security.