CDC grand rounds: National amyotrophic lateral sclerosis (ALS) registry impact, challenges, and future directions

Paul Mehta; D. Kevin Horton; Edward J. Kasarskis; Ed Tessaro; M. Shira Eisenberg; Susan Laird; John Iskander

doi:10.15585/mmwr.mm6650a3

CDC grand rounds: National amyotrophic lateral sclerosis (ALS) registry impact, challenges, and future directions

Paul Mehta
, D. Kevin Horton
, Edward J. Kasarskis
, Ed Tessaro
, M. Shira Eisenberg
, Susan Laird
, John Iskander

Producción científica: Article › revisión exhaustiva

16 Citas (Scopus)

Idioma original	English
Páginas (desde-hasta)	1379-1382
Número de páginas	4
Publicación	Morbidity and Mortality Weekly Report
Volumen	66
N.º	50
DOI	https://doi.org/10.15585/mmwr.mm6650a3
Estado	Published - dic 22 2017

Nota bibliográfica

Funding Information:
A patient with ALS has written, “ALS patients can have a zeal for life rare among patients with other diseases. Shorter life expectancy often spurs patient with ALS to make life experiences and relationships deeper. It is helpful to understand the concept that ‘everyone has a wheel chair,’ and that no one avoids life’s crises forever.” Organizations exist with the mission to defeat ALS through research, and provide support for the thousands of persons living with the disease in the United States. Such groups include the ALS Association, the Muscular Dystrophy Association, and the Les Turner ALS Foundation. However, more support for research is needed. Even with continued support from private donors, foundations, and institutions, rare diseases (those with <200,000 cases diagnosed nationwide)* like ALS still face barriers to research funding and treatment development.

Financiación

A patient with ALS has written, “ALS patients can have a zeal for life rare among patients with other diseases. Shorter life expectancy often spurs patient with ALS to make life experiences and relationships deeper. It is helpful to understand the concept that ‘everyone has a wheel chair,’ and that no one avoids life’s crises forever.” Organizations exist with the mission to defeat ALS through research, and provide support for the thousands of persons living with the disease in the United States. Such groups include the ALS Association, the Muscular Dystrophy Association, and the Les Turner ALS Foundation. However, more support for research is needed. Even with continued support from private donors, foundations, and institutions, rare diseases (those with <200,000 cases diagnosed nationwide)* like ALS still face barriers to research funding and treatment development.

Financiadores
Nationwide

ASJC Scopus subject areas

Epidemiology
Health(social science)
Health, Toxicology and Mutagenesis
Health Information Management

Acceder al documento

10.15585/mmwr.mm6650a3

Otros archivos y enlaces

Citar esto

@article{465a12b1a828447d94cfc88485fd1bbc,

title = "CDC grand rounds: National amyotrophic lateral sclerosis (ALS) registry impact, challenges, and future directions",

author = "Paul Mehta and Horton, \{D. Kevin\} and Kasarskis, \{Edward J.\} and Ed Tessaro and \{Shira Eisenberg\}, M. and Susan Laird and John Iskander",

note = "Funding Information: A patient with ALS has written, “ALS patients can have a zeal for life rare among patients with other diseases. Shorter life expectancy often spurs patient with ALS to make life experiences and relationships deeper. It is helpful to understand the concept that {\textquoteleft}everyone has a wheel chair,{\textquoteright} and that no one avoids life{\textquoteright}s crises forever.” Organizations exist with the mission to defeat ALS through research, and provide support for the thousands of persons living with the disease in the United States. Such groups include the ALS Association, the Muscular Dystrophy Association, and the Les Turner ALS Foundation. However, more support for research is needed. Even with continued support from private donors, foundations, and institutions, rare diseases (those with <200,000 cases diagnosed nationwide)* like ALS still face barriers to research funding and treatment development.",

year = "2017",

month = dec,

day = "22",

doi = "10.15585/mmwr.mm6650a3",

language = "English",

volume = "66",

pages = "1379--1382",

number = "50",

}

TY - JOUR

T1 - CDC grand rounds

T2 - National amyotrophic lateral sclerosis (ALS) registry impact, challenges, and future directions

AU - Mehta, Paul

AU - Horton, D. Kevin

AU - Kasarskis, Edward J.

AU - Tessaro, Ed

AU - Shira Eisenberg, M.

AU - Laird, Susan

AU - Iskander, John

N1 - Funding Information: A patient with ALS has written, “ALS patients can have a zeal for life rare among patients with other diseases. Shorter life expectancy often spurs patient with ALS to make life experiences and relationships deeper. It is helpful to understand the concept that ‘everyone has a wheel chair,’ and that no one avoids life’s crises forever.” Organizations exist with the mission to defeat ALS through research, and provide support for the thousands of persons living with the disease in the United States. Such groups include the ALS Association, the Muscular Dystrophy Association, and the Les Turner ALS Foundation. However, more support for research is needed. Even with continued support from private donors, foundations, and institutions, rare diseases (those with <200,000 cases diagnosed nationwide)* like ALS still face barriers to research funding and treatment development.

PY - 2017/12/22

Y1 - 2017/12/22

UR - https://www.scopus.com/pages/publications/85040000975

UR - https://www.scopus.com/pages/publications/85040000975#tab=citedBy

U2 - 10.15585/mmwr.mm6650a3

DO - 10.15585/mmwr.mm6650a3

M3 - Article

C2 - 29267263

AN - SCOPUS:85040000975

SN - 0149-2195

VL - 66

SP - 1379

EP - 1382

JO - Morbidity and Mortality Weekly Report

JF - Morbidity and Mortality Weekly Report

IS - 50

ER -

CDC grand rounds: National amyotrophic lateral sclerosis (ALS) registry impact, challenges, and future directions

Nota bibliográfica

Financiación

ASJC Scopus subject areas

Acceder al documento

Otros archivos y enlaces

Huella

Citar esto