I have asked Tara if I could forward this information to the listservs and she agreed.  Please see information below--hope you will forward to anyone you know that may be interested.

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Dear NEALS Member,

One of our NEALS investigators, Dr. Anne-Marie Wills, is conducting a survey of nutritional practices in ALS. Please see the IRB approved letter below and follow the link to an online survey. Please forward this email to your colleagues who work with ALS patients who require percutaneous nutrition. This survey is confidential and completely voluntary.

Thank you for your time and support!

Sincerely,
Tara Lincoln

Tara C. Lincoln
Program Manager
The Northeast ALS Consortium
www.alsconsortium.org
xxxxxx@xxxxxxxxxxxx
617-724-7398

Dear ALS Clinic Director,
We are conducting a survey of current practices in prescribing tube feedings to patients
with Amyotrophic Lateral Sclerosis (ALS). This is the “Current Practices in Enteral
Nutrition (EN) in ALS” study led by Principal Investigator Dr. Anne-Marie Wills. Please
forward this 10 minute online survey to all nurses, dietitians and physicians, affiliated
with your clinic, who prescribe or recommend tube feedings to your ALS patients.

Please let them know that the survey is highly confidential and that participation is
entirely voluntary. Participants may also skip any question that they are uncomfortable
with.

If they complete the survey, they will be entered into a drawing for an iPAD2, with the
winner announced in October. They will be asked to include their email contact
information in order to be entered into the iPAD2 drawing, which will be kept
confidential and will only be viewed by IRB approved members of this study. If they do
not wish to be contacted in the future for clarification of their answers, their contact
information will be destroyed after the iPAD2 drawing.

Here is the link to the online survey:
https://limesurvey.partners.org/limesurvey/index.php?sid=88325&lang=en

For more information about the High Fat/High Calorie Diet versus Optimal Nutrition in
ALS clinical trial, please visit:
http://www.alsconsortium.org/nealsclinicalresearch_High_Fat_Study.html

If you would like to speak to someone not involved in this research, please contact the
Partners Human Research Committee at 617-424-4100.

Sincerely,

Anne-Marie Wills, M.D. M.P.H.
Instructor in Neurology
MDA ALS Clinic
Wang ACC 835
15 Parkman St.
Boston, MA 02114
(617) 643-2643