Polio Place

NEW STUDY ON AFM AND POLIO
A new study concerning acute flaccid myelitis (AFM) and polio is being conducted by researchers at Johns Hopkins. They are currently recruiting polio survivors to participate in the study.

The objective of the study is described as follows: “We are trying to understand why some people get better quickly after an infection and others may have breathing problems, and still others may have neurologic symptoms or paralysis. We would like to compare the cells and DNA of persons with severe symptoms with those who may have been exposed to the same virus but did not have the same severe outcomes. We plan to compare the DNA sequence of people with paralytic poliomyelitis to the DNA sequence of people with acute flaccid myelitis (AFM) following a viral infection diagnosed from 2012-present. We are looking for genetic variants that both groups share that can help explain why a virus can cause mild symptoms in some people (respiratory symptoms or non-paralytic polio), but severe outcomes like paralysis in others like you have experienced.”

Polio survivors are encouraged to participate. You will be asked to fill-out a questionnaire and submit a saliva sample by mail. 

Contact information: 
Dr. Priya Duggal (Co-Principal Investigator)
E-mail: pduggal@jhu.edu
Phone: 410-955-1213

Betsy Dee (Research Assistant) 
E-mail: edee1@jhu.edu 
Phone: 410-614-0146

(Posted 3/11/19)

You are invited to participate in a research study entitled, “Falls and Fear of Falling in Adults who Require Wheelchairs for Locomotion.” To participate you must be an adult who:

• Is at least 18 years old
• Has a neurological diagnosis (such as but not limited to post-polio syndrome, spinal cord injury, multiple sclerosis) for at least 6 months
• Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
• Has a computer with internet access.
• Is able to read and understand English.

If you are interested in completing an anonymous on-line survey about your medical condition, falls, risk of falling, and fear of falling, please click on this link: https://www.psychdata.com/s.asp?SID=183112

It will take you up to about 20 minutes to complete it. People who complete the survey will be eligible for a drawing for a $20 gift card.

You may contact Carolyn Da Silva, PT, DSc at cdasilva@twu.eduor 713-794-2087 for more information or questions. She is a professor in the School of Physical Therapy at Texas Woman's University and physical therapist at the post-polio out-patient clinic at TIRR Memorial Hermann Rehabilitation and Research in Houston, Texas.

(Posted 12/18/18)

Post-polio Syndrome: Time to Diagnosis. A Survey of Post-polio Survivors' Experience with the Diagnosis of Post-polio Syndrome.
Baylor College of Medicine

A Multicenter, Multi-country Study of Immune Globulin Intravenous (Human) Flebogamma® 5% DIF is underway.

DePaul University researchers invite persons with ME, CFS, MS, lupus, cancer, post-polio syndrome or HIV to participate in a voluntary research study to determine which symptoms may be commonly experienced by individuals in multiple fatiguing illness groups, and which symptoms may be unique to each illness. Participation includes completion of a confidential online questionnaire, which takes approximately 45 minutes to complete.

Eligibility Criteria:
• Adults at least 18 years of age
• Must be able to read or speak English
• Have a diagnosis of multiple sclerosis, lupus erythematosus, cancer, myalgic encephalomyelitis, chronic fatigue syndrome, post-polio syndrome, or HIV.

If you are interested in participating, take the survey.

This survey is open to any English-speaking participant over the age of 18 with post-polio syndrome, regardless of location.

Our goal is to understand how the DePaul Symptom Questionnaire (DSQ; Jason et al., 2010), an instrument assessing frequency and severity of a variety of symptoms associated with chronic fatigue syndrome (CFS), can be used to differentiate post-polio syndrome and CFS as chronic conditions with differing symptomatology, given that both conditions do involve fatigue.
 

At Promoting Healthy Ideas: PHI’s 11th International Conference, Dr. Mark Loeb from McMaster University (Hamilton, Ontario) explained a study he is doing, which will try and answer if people who contracted polio had a genetic predisposition to developing it. (FYI: No travel is involved. You will ultimately be asked to send a swab to them.)

Participants Wanted: Researchers at the University of Birmingham are looking for people with post-polio syndrome to volunteer to take part in a research study.

Participants Wanted: Do you live in Western Pennsylvania? Check out this research opportunity funded by the Department of Defense.

Study Title: Pilot Study of Obstructive Sleep Apnea Screening in Polio Survivors
A research study of polio survivors is being conducted by Dr. William DeMayo to see if the use of a portable home sleep monitor can give the doctors another way to see if polio patients have sleep problems. Please call the Study Coordinator, Chris Smith, BSN, RN at 814-269-5238 or toll-free at 866-707-8424 for more information.

Study Description: This study involves the use of a portable home sleep monitor. You will be given instructions on how to use the sleep monitor. You will take the sleep monitor home and use it while you sleep. While you are sleeping, it will record details about how you breathe. You must then return the sleep monitor to our office. A sleep specialist, who is a doctor, will look at the data from your home sleep study. It will take about two weeks for us to get the results of your study. We will then talk about the results of your home sleep study with you at another visit.

You may participate if:

• You are a polio survivor and you are 18 or older.
• Not currently using bi-level positive airway pressure (BIPAP) or continuous positive airway pressure (CPAP) night-time ventilation.
• Not currently receiving oxygen supplementation at night.

Location: Conemaugh Health System, Johnstown, Pennsylvania 

Invitation to participate in Aging with a Physical Disability Survey Study from the Aging Rehabilitation Research and Training Center, Department of Rehabilitation Medicine at the University of Washington.

Are you a cancer survivor who had limitations in activities of daily living prior to your cancer?

If you have completed active treatment for your cancer, I invite you to participate in a study to help us understand how cancer survivors who had a functional limitation or disability before being diagnosed with cancer take care of their health. We know so little about the cancer experience of people who had a functional limitation prior to their cancer diagnosis and treatment. Your information will help health care providers work more effectively with survivors such as yourself. You can earn $25 by completing a questionnaire packet. If you are over the age of 21 and have completed active treatment, please call us at 800-687-8010 or email us at maxhealth@mail.nur.utexas.edu for more information.

Heather Becker, PhD, The University of Texas at Austin

Participants Wanted: Live in the Johnstown, Pennsylvania area? Check out this research opportunity funded by the Department of Defense.

Study Title: Investigation of Cognitive Function Status in Polio Survivors
with and without Post-Polio Syndrome

A research study of polio survivors is being conducted by Dr. Kimbra Kenney (DC area) and Dr. William DeMayo (Johnstown, Pennsylvania area) and colleagues to investigate the problems involving mental fatigue that may affect concentration, memory, attention, etc. Qualified individuals will receive at no cost, the following study related items:

• Physical and Neurological Exams
• Laboratory Testing
• Neuropsychological Testing

Study Description: This study's objective is to assess if polio survivors with or without PPS are having significant problems affecting their capability to think clearly, to concentrate, pay attention, register and store memory, etc.

Time Requirements: The study will last a total of 2-4 weeks and required 2 visits to the study center that enrolled you.

You may participate if: You are a polio survivor and you are 18 or older.

Locations: Conemaugh Health System, Johnstown, Pennsylvania.