CDC Launching National Neurological Conditions Surveillance System to Study MS

CDC Launching National Neurological Conditions Surveillance System to Study MS

The U.S. Congress is supporting with $5 million the National Neurological Conditions Surveillance System (NNCSS), an initiative to be launched by the Centers for Disease Control and Prevention (CDC) to help researchers better understand who develops neurological disorders and why.

The NNCSS was authorized by Congress as a part of the 21st Century Cures Act, signed into law Dec. 13, 2016, but was not funded until fiscal year 2019 when the Labor, Health and Human Services, and Education spending bill was signed in September.

Funding and implementing the NNCSS has been a priority of the National Multiple Sclerosis Society.

The surveillance system will focus initially on two diseases, multiple sclerosis (MS) and Parkinson’s disease, and will serve as demonstration projects to help the CDC determine which areas are most affected by neurological conditions.

The purpose of NNCSS is to expand surveillance of neurological conditions. With improved data collection, it may be possible, for instance, to identify environmental or viral triggers of MS.

“I can’t help but wonder if my daughter will hear ‘you have MS’ someday; my current neurologist says that her chance is 1 in 40. Without real, current data, MS researchers have difficulty identifying and pursuing potential leads of environmental or viral triggers for MS,” Rebecca, a MS patient from Detroit said in a MS Society press release. Rebecca was diagnosed in 2013; her father also has MS.

The NNCSS will build on the success of the MS Society Prevalence Initiative, launched in 2014, with leading experts in MS epidemiology, statistics and healthcare, who utilized information from Medicare, Medicaid, the Veteran’s Health Administration, and private insurers to determine the number of people in the U.S. affected by MS.

Join our forums and be part of the Multiple Sclerosis News Today community!

Preliminary results from that study indicated that nearly 1 million people in the U.S. have MS, more than twice the previously reported number.

“The information gleaned from the Society’s prevalence initiative combined with the data from the NNCSS will help us better understand multiple sclerosis – who gets it and possible reasons why,” said Bari Talente, the society’s executive vice president of advocacy.

“We look forward to working with the CDC to make sure the NNCSS collects information on incidence, age, race, ethnicity data, as well as geographic data that can help refine and target research we hope will lead to a cure,” Talente said.

12 comments

  1. jen morrison says:

    I think that MS shows up in families that already have quite a few members with SOME type of autoimmune disorder. Just in my immediate family there is Fibromyalgia, Graves disease, Hashimotos Thyroditis, Meniere’s disease, Rheumatoid Arthritis, and me with Multiple Sclerosis. No family member has more than one of these issues though. Maybe there is something in a families genetic make up that makes them prone to an autoimmune disorder. Maybe finding that “something in the families genetic make up” would allow researchers to ‘turn off’ or ‘fix’ that aspect and as a result lower the chance of autoimmune disease for that family in general.

  2. Gwendolyn E Mugliston, PHD, DVM MSN says:

    I am thrilled there is an initiative to explore the causes, all causes, of MS and Parkinson’s. I am quite old and not useful to you at this time. I expect. However, if you need something I might provide beside money (which I have very little of) I would be glad to help. I have been coping with MS since I was 27. I am now this year 78.

    • Dianne Welgan says:

      Dx’d at 28 and Im a 60 year old physiotherapist.
      SICK of waiting for a cure. Its quite obvious that stem cells are the lead to the cure.
      Sickens me the money wasted with study after study on ‘How and whys’

      • Janet Gordon says:

        I’m with you Dianne. I’m a 70 year old who is also SICK of waiting for stem cell therapy. We KNOW stem cell transplants work. Why can’t the money be used to help us have one?
        I have PPMS. Stem cells are the only way for me.

  3. Rob says:

    I couldn’t agree more Catherine. I had just turned 34 years old in September 2012, and my wife was 6 months pregnant with our now 5 year old son. She has a blood clot condition in which I gave her shots of Lovenox (a blood thinner)every single day of BOTH her pregnancies. Times were EXTREMELY DIFFICULT not only because I’d woken up BLIND (got my vision back now), but expecting your FIRST KID @ 34 years old… I experienced quite a bit of anxiety and whatnot, just knowing that I had a “BOY” on the way (have 2 now, one began K-garten this year and my 3 year old is still with me at home) had me concerned about how was I gonna do this or that with him if I was BLIND! I played sports in high school, so being a Dad, I couldn’t wait to teach mine baseball, football, basketball, etc. I’ve just had my 70th infusion of Tysabri, and been relapse free since beginning it. I thought about Lemtrada, trying it, but then I figure why mess with or change something that’s ALREADY WORKING? I been good for 7-1/2 years, so I figure I’ll continue on my current path, until something FORCES me off it or something. A word of advice to all other guys out there with MS or not, I’ve stayed home with both my boys since their birth. What I’ve found to be absolutely, positively, 100% TRUE, is “Women” REALLY ARE stronger, smarter, and SIMPLY BETTER than “Men” at everything! When my wife returned to work after our first, I’ve never wanted BREASTS so bad in my life (other than for purely pleasureful purposes). When she was home, it was “PLOP, SUCK SUCK” everything’s fine. When she was gone, all I could do was CRY WITH HIM, cause I didn’t have a booby for him! HAHAHA! I MADE IT THOUGH! And still am! I like to tell others & myself, that “I HAVE MS, MS DOES NOT HAVE ME”!

  4. Scientists have being studying ‘HOW AND WHY FOR EVER’.
    This is ridiculous! GET A MOVE ON!
    Same story for Cancer and every other disease out there.
    Humans are smart enough to put a man on the moon etc. etc. whild we suffer hear on Earth!!!!
    PRIORTIES, PRIORITIES, PRIORITIES, PRIORITIES!
    Whose in charge????

  5. Dawn says:

    I am a female,Caucasian woman. My multiple sclerosis did not begin until I was in my 60s. Prior to that I was very active and travels a lot internationally. I travel two most continents and lived in the turkey and the democratic Republic of the Congo. If I can be of any assistance, please text me.

  6. Teresa Clifford says:

    Both my daughter and I have MS but, two different kinds. She was diagnosed at 26 with Relapsing Remitting and I was diagnosed at 50+ with Progressive and possible Fibromyalgia along with it. Fibromyalgia seems to run on the maternal side of the family. No history of MS that we can find.
    I plan on leaving my body to a medical school and just maybe it will help find a cure!

  7. Dale Degraffenreid says:

    Dianne W. that is a profound statement you just made. I think the reason research can’t seem to get their research completed lies between the big “pharms” and the FDA. Pharms Donate very large amounts to FDA only to lag for one reason. If they find a cure they would not have so much money and power. They don’t want us well. They make money off us.

Leave a Comment

Your email address will not be published. Required fields are marked *