The SCN2A International Natural History Study (NHS) is comprised of clinicians collaborating from multiple academic institutions, including US, European and Australian based clinicians.
Dr. Katherine Howell, from the Royal Children’s Hospital and Murdoch Children’s Research Institure, Melbourne, is the lead principal investigator and can consent patients from any country. Prof. Markus Wolff, Prof. Ingrid Scheffer, Prof. Roberta Cilio and Assoc Prof. Ann Poduri are all co-investigators in this collaborative study.
A NHS provides knowledge of a disease’s natural history which is essential to building the scientific foundation for an effective clinical development program. This is especially the case when developing drugs to treat rare diseases, like SCN2A.
Natural history studies don’t just track the course of diseases over time but identify demographic, genetic, environmental, and other variables that shape the drug development process.
HOW DO I PARTICIAPTE?
It is as simple as emailing Dr Howell’s team on firstname.lastname@example.org and providing the research team with your contact information.
You can hear Dr Howell talking about the NHS in more depth in an episode of the SCN2A Insights podcast available here.