Congress Funds Launch of First Psoriasis Patient Registry

Jan 07, 2010, 12:57 ET from National Psoriasis Foundation

$1.5 million approved for CDC in 2010 federal appropriations bill

WASHINGTON, Jan. 7 /PRNewswire-USNewswire/ -- Millions of Americans suffering from psoriasis and psoriatic arthritis got a year-end boost from the federal government when it approved $1.5 million for the first-ever psoriasis patient registry at the Centers for Disease Control (CDC).

By aggregating data from the profiles of thousands of people with psoriatic disease, the patient registry will provide much-needed insight into how psoriasis and psoriatic arthritis impact those affected. Patient registries for other chronic diseases have been credited with improving treatment by as much as 50 percent through helping researchers and clinicians discover critical patterns in treatments and outcomes.

A disabling and disfiguring disease that appears on the skin, psoriasis is the most prevalent autoimmune condition in the country, affecting as many as 7.5 million Americans. Up to 30 percent of people with psoriasis will also develop psoriatic arthritis.

"As an individual afflicted with psoriasis and psoriatic arthritis, I am excited to have a registry that will help discover why and how I developed this disease and what treatments are best for me to manage it," said Rick Seiden, chairman of the National Psoriasis Foundation Board of Trustees. "It will help answer questions such as, why did I develop serious psoriatic arthritis, while others with psoriasis did not?"

The approval of the $1.5 million by Congress was realized after months of effort from the National Psoriasis Foundation and its 58,000 advocates. In 2009, Psoriasis Foundation advocates sent more than 3,000 messages to their elected officials urging them to increase the investment in psoriasis research by the federal government. The cause was elevated on Capitol Hill further by singer -- and psoriasis patient -- LeAnn Rimes' trips to D.C. last year to advocate for the registry.

The following lawmakers championed the cause on behalf of their many constituents who are challenged with psoriatic disease: Rep. David Wu (D-Ore. 1st), Rep. Nita Lowey (D- N.Y. 18th), Rep. Debbie Wasserman-Schultz (D- Fla. 20th), Rep. Todd Tiahrt (R-Kan. 4th), Sen. Tom Harkin (D-Iowa), Sen. Thad Cochran (R-Miss.), Sen. Robert Menendez (D-N.J.), Sen. Ron Wyden (D-Ore.) and Sen. Jeff Merkley (D-Ore.). This landmark decision opens the door for future federal funding of psoriasis research.

About the National Psoriasis Foundation

The National Psoriasis Foundation is the world's largest nonprofit organization serving people with psoriasis and psoriatic arthritis. Our mission is to find a cure for psoriasis and psoriatic arthritis and to eliminate their devastating effects through research, advocacy and education. For more information, call the Psoriasis Foundation, headquartered in Portland, Ore., at 800.723.9166, or visit

SOURCE National Psoriasis Foundation