Wednesday, July 23, 2014

A Groundbreaking Commitment to Psychiatric Research

Youtube - Broad Institute

By Ken Duckworth, M.D., NAMI Medical Director

Today I was fortunate to be on a panel to discuss the findings of a major piece of work published in Nature and the unprecedented $650 million dollar gift from Ted Stanley to the Broad Institute to further this type of work. The event was a celebration of Mr. Stanley’s game changing vision and commitment to research in the underlying biology of psychiatric illnesses, and a call to action for more progress in this crucial area. I represented the perspective of NAMI and our urgent need for better treatment options.

The event was held at the Broad Institute in the heart of the MIT campus, which has become a hotbed of bioscience innovation and research. The Broad institute itself is bright and open, and conveys a sense of possibility. This was once a scruffy neighborhood and it was remarkable to experience the new energy flowing here. The Kendall Square area, at the center of the MIT campus, has been transformed by the influx of scientists and industry. This gift will continue to attract the best minds to continue the remarkable research momentum and help fill a critical need when funding from the U.S. government is uncertain.

The study compared the genomes of more than 37,000 people living with schizophrenia and compared their genes to people who do not live with the condition. The riddle that is the gene component to schizophrenia has vexed many but now the evidence base is rapidly expanding. Sorting out an enormous number of puzzle pieces and making patterns of them is the work of complex genetic assessment. The study identified 108 key genes (83 of which have not been previously linked to schizophrenia) in this analysis and the Broad Institute will do a deep dive of each of them. This study is only the first step; one of the lead scientists told me more papers are in press and will be coming out later this year.

I have invited the lead scientists to our national convention in San Francisco in 2015 to share their insights to our community. Steve Hyman, the director of the Stanley Institute for Psychiatric Research at the Broad Institute of MIT and Harvard and former director of the NIMH has emphasized an open source philosophy. This means that all the data sets will be shared with researchers from across the world. This approach will clearly advance the field faster. This is an advance in scientific culture as well as neuroscience.

In my work as a psychiatrist at the Prevention and Recovery from Early Psychosis (PREP) clinic I say “I don’t know” a great deal. My young patients and their families ask me, what caused these voices? How does the medication work exactly? Will reducing my medication after 3 years of no symptoms be a big risk to my recovery? For these and many other questions I offer my best understanding from the imperfect literature, and our theoretical understandings. For many of these questions we simply don’t have the building blocks we need. We simply need to learn more so better shared decisions can be made. My patients and families deserve better understanding to deal with symptoms that have so powerfully impacted their lives.

Patience and humility are of course key themes in this kind of basic science research. The researchers are humbled to say that they cannot promise a quick return, yet carry clarity of purpose: cancer was once a scary and seemingly unknowable illness that has very few treatments. Today because of better knowledge of the underlying science, there are new options being developed on a regular basis in the field of oncology.  This gift and this culture change and this line of inquiry will hopefully yield similar results in our field.

19 comments:

jim hayes said...

Thanks for giving us hope !

Anne said...

What a magnificent gift! And very uplifting that perhaps some major forward movement in psychiatric research will finally occur. Sadly, this news is too late for my son who suffered with schizophrenia for 10 years. He ended his life at the age of 28 because he didn't believe anything was ever going to change or get any better. I am still hopeful that there will be great improvements on the near horizon.

Gloria Bandy said...

Thank you, Ted Stanley! Your contribution to psychiatric research gives us all hope. I understand your own son was challenged by bipolar disorder and received the help he needed. Perhaps others will follow your lead, and we can finance the necessary work to alleviate suffering of millions.

Flan said...

This gives hope to finding not only the cause (s) but also more effective treatments, and perhaps even ways to prevent the onset of major symptoms.

I am very thankful to Ted Stanley, the Broad Institute and for the open source approach that will be used to further advance the research. I hope this will bring practical results in my lifetime. Unfortunately, my twin brother Paul never recovered from his psychosis and was tormented by hallucinations and delusions for over 30 years. It took a toll on his cognitive abilities and the ineffective approach to long term supports for people as disabled as Paul was took a toll on his physical health. I hope to see this reversed before I die.

Anonymous said...

How do I go about getting my record expunged? I was falsely diagnosed with psychosis in 1998 and the dr would not amend the record even after I provided evidence that what was going on at the apartment building where I was living was affecting other tenants as well. So - how do I go about getting this ridiculous diagnosis off my record?

ocdtalk said...

This article gives so much hope to all those, and their loved ones, who suffer from mental illness.I'm heartened to see such strong support for this important research.

Anonymous said...

I've lived with schizophrenia for about 32 years and this research sounds so exciting to me. I'm fortunate in that I've found a pretty good drug in Abilify but so many people that I know with sz have no help. Please keep up the good work and research. I love what the scientists and doctors are doing.

Thanks much,

Jeff

Dawn said...

THANK YOU MR STANLEY!!! What a wonderful gracious gift for those who have suffered, and are suffering from Schizophrenia. The fact that the research will be open source is a blessing doubled.
I pray this also helps to shed light on other types of mental illness as well so that no Psychiatrist has to say "I don't know" to those desperate for answers.

Anonymous said...

Wow this is so amazing it is a very big step in the discovery of medication that may work.

Anonymous said...

Do they need more info to study? This problem runs in my father's family line and, although he is deceased, I am willing to donate a sample for study and I have a son who is diagnosed with this sort of problem. I can't speak for him, but I'm willing to give a sample for study if they need one.

Thanks.

dave stein said...

Hi
I am sure your research will often be very valuable. It seems though that the brain initiative and brainome projects should comparing data. I am not sure if there iscollaboration between these projects

Thanks Dave Stein
jumpster2@hotmail.com

Deborah Martinez said...

This is wonderful news!
I speak as the Mother of a beautiful, driven, athletic young woman with a lifetime full of passionate dreams in front of her. Now 28, her life was stolen at the age of 18 by this senseless catastrophic disease. The wrecking ball never tires... How can we contribute in your research? Our lives have been so profoundly impacted, I have to cling to the belief that some purpose may present itself. I watch my daughter living a nightmare everyday, though her "life" was extinguished long ago. "Make your mess your message." I want to help.

Dr Marian said...

Had a detailed comment, re. schizophrenia in family, son, brother-in-law, aunt-in-law, grand-daughter, but couldn't recall google info. Don't want to type it again! But my prayers are with this research!

Deborah Martinez said...

This is wonderful news!
I speak as the Mother of a beautiful, driven, athletic young woman with a lifetime full of passionate dreams in front of her. Now 28, her life was stolen at the age of 18 by this senseless catastrophic disease. The wrecking ball never tires... How can we contribute in your research? Our lives have been so profoundly impacted, I have to cling to the belief that some purpose may present itself. I watch my daughter living a nightmare everyday, though her "life" was extinguished long ago. "Make your mess your message." I want to help.

Anonymous said...

Thank heavens for people like the Stanley's, I think mental health is always on the back burner, but private investors can make the difference.

Debbie said...

Thank you Ted Stanley! It is way past time to investigate mental illness and find answers and treatments which will positively impact our lives.

Judy Beckman said...

This is great news! I pray for constructive results to alleviate suffering in many ways for those who suffer from schizophrenia.

Thank you NAMI. We are most certainly going in the right direction!

Marie Lalala said...

What wonderful news!! I remember my total breakdown and attempt at suicide over seven years ago. There seemed to be no hope for mental illness awareness or support. I am now working full-time as a cake decorator/ baker and going back to college!! I look back and feel so proud of my accomplishments. Without continued growth in the field of mental illness research, I may be dependent on my family as I was in the past. Great great progress!!

kt said...

Thank you for this gift. My son has been able to receive a good education and job. He is married with a child. He recently changed meds due to low white blood cell count. This is stressful for him and has caused some weight gain. I hope the meds are not harming him further and I am grateful for all he has accomplished with them.