https://www.lymedisease.org/touched-by-lyme-ngc-shut-down/ APR 2018

TOUCHED BY LYME: Guidelines clearinghouse to shut down in July

by Dorothy Kupcha Leland

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The Agency for Healthcare Research and Quality (AHRQ) is a small, little-known part of the US Department of Health and Human Services (HHS).

One of the functions that AHRQ has performed up until now is to provide the National Guidelines Clearinghouse (NGC).

NGC is a database of clinical guidelines for a wide variety of diseases. Its purpose is to inform physicians on the best way to treat various medical conditions.

Two years ago, the Lyme community was heartened when the NGC removed the IDSA Lyme treatment guidelines (which we view as anti-patient) from its listing and left in place the ILADS Lyme treatment guidelines (which we view as pro-patient).

Alas, now it seems that the landscape is changing.

Last week, the AHRQ posted the following announcement on its website:

The AHRQ National Guideline Clearinghouse (NGC, guideline.gov) Web site will not be available after July 16, 2018 because federal funding through AHRQ will no longer be available to support the NGC as of that date. AHRQ is receiving expressions of interest from stakeholders interested in carrying on NGC’s work. It is not clear at this time, however, when or if NGC (or something like NGC) will be online again. In addition, AHRQ has not yet determined whether, or to what extent, the Agency would have an ongoing role if a stakeholder were to continue to operate the NGC. We will continue to post summaries of new and updated evidence-based clinical practice guidelines until July 2, 2018. For any questions, please contact Mary.Nix@ahrq.hhs.gov.

Say what? AHRQ “is receiving expressions of interest from stakeholders interested in carrying on NGC’s work”? Um, and who might those “stakeholders” be?

Right off the top of my head, I’d say the IDSA holds a pretty big stake in the outcome of this decision. We sure wouldn’t want that fox guarding the henhouse.

Stay tuned. It may be a wild ride.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

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For more:  https://madisonarealymesupportgroup.com/2016/02/12/idsa-guidelines-removed-from-ngc/

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https://madisonarealymesupportgroup.com/2017/12/02/still-a-pig-with-lipstick-cdc-removes-link-to-idsa-guidelines/

https://madisonarealymesupportgroup.com/2017/08/19/dr-liegner-guidelines-used-by-managed-care-causing-lyme-deaths/

https://madisonarealymesupportgroup.com/2018/04/08/the-battle-to-fight-lyme-disease-continues/  “It’s very complicated, and for the CDC to set up a bunch of guidelines from incomplete research done in the 1970s and ’80s is very frustrating,” said Ahern, a 1977 Scotia-Glenville High School graduate who has spent the last 20 years as a professor of microbiology at SUNY-Adirondack in Queensbury. “We need to change our approach to everything about Lyme disease, but there are an important group of individuals who are still in power that refuse to believe they were half wrong and will not yield the stage. We need more research. We need better testing.”

https://madisonarealymesupportgroup.com/2017/06/29/british-lord-says-cdcidsa-lyme-guidelines-not-fit-for-purpose/  “Outdated guidelines, unreliable blood tests, insufficient training for doctors, a lack of tick-borne specialists of calibre and a widespread lack of awareness among the general public of preventive measures are all factors that are leaving us alarmingly ill-equipped to tackle a problem that poses a rapidly increasing risk to every UK citizen.”