Right to Try Laws. Should patients have the right to try therapies which are still in the clinical trial stage?



Healthcare professionals
Healthcare professionals
Last saturday in Colorado in America Governor John Hickenlooper signed the first “right to try” legislation into law.

Put simply this makes it legal for terminally ill patients to access products and therapies which are still in the clinical trial stage.

Obviously this has caused lots of discussion in the USA but it remains a very interesting idea. Indeed one article I readed likened it to the film the Dallas Buyers Club. One which clearly has some merit. You can read more about right to try laws in a recent article in the UK’s Daily Telegraph here.

So what do you think?

We thought it would be interesting to run a poll for our readers on the subject.

It would be great if you could share you opinions by voting. If you wish please feel free to use the comments section below to expand on your ideas!



Autism and Eye Contact – Read up on Marcus Autism Center’s research into very early signs of autism


Marcus Autism Center
Marcus Autism Center
As regular readers of this blog will know we are very interested in early signs of autism. Because as we all know early diagnosis means early intervention.

So a few weeks ago we ran a poll regarding people with autism and eye contact. Drop round here to have a look at the results.

While investigating the area in more detail I came across the new research from Marcus Autism Center. they have very graciously given us permission to reproduce the following explanation of the results.

I have to say that this describes our son rather well. So I was wondering how many of you noticed decline in eye contact from your child with autism or indeed were told about it happening to you?

“Researchers at Marcus Autism Center, Children’s Healthcare of Atlanta and Emory University School of Medicine have identified signs of autism present in the first months of life. The researchers followed babies from birth until 3 years of age, using eye-tracking technology, to measure the way infants look at and respond to social cues. Infants later diagnosed with autism showed declining attention to the eyes of other people, from the age of 2 months onwards.


The study followed two groups of infants, one at low and one at high risk for having autism spectrum disorders (ASD). High-risk infants had an older sibling already diagnosed with autism, increasing the infant’s risk of also having the condition by 20 fold. In contrast, low-risk infants had no first, second, or third degree relatives with autism.

“By following these babies from birth, and intensively within the first six months, we were able to collect large amounts of data long before overt symptoms are typically seen,” said Warren Jones, Ph.D., the lead author on the study. Teams of clinicians assessed the children longitudinally and confirmed their diagnostic outcomes at age 3. Then the researchers analyzed data from the infants’ first months to identify what factors separated those who received an autism diagnosis from those who did not. What they found was surprising.

“We found a steady decline in attention to other people’s eyes, from 2 until 24 months, in infants later diagnosed with autism,” said co-investigator Ami Klin, Ph.D., director of Marcus Autism Center. Differences were apparent even within the first 6 months, which has profound implications. “First, these results reveal that there are measurable and identifiable differences present already before 6 months. And second, we observed declining eye fixation over time, rather than an outright absence. Both these factors have the potential to dramatically shift the possibilities for future strategies of early intervention.”
Jones is director of research at Marcus Autism Center and assistant professor in the Department of Pediatrics at Emory University School of Medicine. Klin is director of Marcus Autism Center, chief of the Division of Autism & Related Disorders in the Department of Pediatrics at Emory University School of Medicine and a Georgia Research Alliance Eminent Scholar.
The researchers caution that what they observed would not be visible to the naked eye, but requires specialized technology and repeated measurements of a child’s development over the course of months.

“To be sure, parents should not expect that this is something they could see without the aid of technology,” said Jones, “and they shouldn’t be concerned if an infant doesn’t happen to look at their eyes at every moment. We used very specialized technology to measure developmental differences, accruing over time, in the way that infants watched very specific scenes of social interaction.”

Before they can crawl or walk, babies explore the world intensively by looking at it, and they look at faces, bodies, and objects, as well as other people’s eyes. This exploration is a natural and necessary part of infant development, and it sets the stage for brain growth.

The critical implications of the study relate to what it reveals about the early development of social disability. Although the results indicate that attention to others’ eyes is already declining by 2 to 6 months in infants later diagnosed with autism, attention to others’ eyes does not appear to be entirely absent. If infants were identified at this early age, interventions could more successfully build on the levels of eye contact that are present. Eye contact plays a key role in social interaction and development, and in the study, those infants whose levels of eye contact diminished most rapidly were also those who were most disabled later in life. This early developmental difference also gives researchers a key insight for future studies.

“The genetics of autism have proven to be quite complex. Many hundreds of genes are likely to be involved, with each one playing a role in just a small fraction of cases, and contributing to risk in different ways in different individuals,” said Jones. “The current results reveal one way in which that genetic diversity may be converted into disability very early in life. Our next step will be to expand these studies with more children, and to combine our eye-tracking measures with measures of gene expression and brain growth.”

The study, Attention to Eyes is Present But In Decline in 2-6 Month-Olds Later Diagnosed with Autism was funded by the Simons Foundation, the National Institute of Mental Health, the Marcus Foundation and the Whitehead Foundation”

Do you suffer from chronic pain? Take part in a survey for the University of Colorado and you could be entered in a draw and win $50


University of Colorado Denver
University of Colorado Denver

The University of Colorado Denver is running some interesting research with people who suffer from various types of chronic pain including fibromyalgia.  Jessica Payne-Murphy, who is running the survey, has written a short post outlining the scope of the study!

Payne-Murphy writes “You are invited to take part in a research study: Acceptance-Based Factors in Chronic Pain: A Comparison Between Fibromyalgia and Low Back Pain Patients in an Internet Support Group Sample (COMIRB No: 13-3263). This study is being led by Jessica Payne-Murphy, M.A. at the University of Colorado Denver.

The study involves answering a series of online questionnaires designed to increase understanding of chronic pain. We are inviting participants (age 18 and older) who have been and are currently managing low back pain or fibromyalgia for at least 3 months to complete an online survey. It is anticipated that this survey will take approximately 30-45 minutes of your time to complete.

If you choose to participate in the study, you will have the opportunity to enter a drawing for one of up to ten $50 Amazon.com or Amazon.eu gift cards.

In addition, we request that you forward/share the survey link to other individuals with chronic low back pain or fibromyalgia who may wish to participate in this study so that they may have the opportunity to assist us in gathering information about chronic pain and online support groups.”

Please click on the following link if you are interested in learning more about the research study:

https://redcap.ucdenver.edu/surveys/?s=GCZEdEQBgd

If you have any questions or concerns, please contact Payne-Murphy at at https://www.facebook.com/UCDChronicPainResearchStudy?ref=hl

Or use the comments boxes below to ask her any questions.


What causes autism? What this amazing film, called Unlocking Autism, about new research into the causes of autism and ASD!



Unlocking Autism
Unlocking Autism
Claude is profoundly autistic. His mother Dr Rosamund Hill is a neurologist working on a new research project to uncover the genetic causes of autism. This fascinating documentary follows their story.

You can watch this fascinating video from AttitudeLive of New Zealand here


Multiple Sclerosis Research – Are you a Parent with MS who has a child aged 9-12 years? Please help Maria Hadji-Michael with her doctoral research.


 Multiple Sclerosis Research
Multiple Sclerosis Research

Maria Hadji-Michael has asked us to help her promoted some research she is conducting with people who have MS and have children aged between 9 and 12.

She writes “As part of my Doctorate in Clinical Psychology I am looking for healthy families with children aged 9-12 years to take part in my simple questionnaire – based study. I am investigating how children who have a parent affected by MS cope in families and compare the results to families where both parents are unaffected by illness.

If you decide to take part, you would be asked to simply complete some questionnaires, your spouse/ partner will complete some and also your child will complete their own set. These questionnaires would take no longer than 15 mins per family member and I will provide you with a stamped address envelop for you to post them back to me directly.

My research has obtained full ethical approval from the NHS research ethics committee and all your information will be kept securely and in confidence.


The research is valuable and important, as it will help identify the needs of young children who have a parent with an illness and in this way enable clinicians to design and implement services to address these needs in the future. If you can help me out with this research project please let me know and I will send you the consent forms and questionnaires. Thank you in advance for your help.

Please send me a message over Facebook or via email maria.c.hadjimichael@gmail.com

Maria Hadji-Michael