Notices include announcements from MDS members and from nonprofit organizations with news of interest or a call for action (research, patient activities, scholarships, studies, etc.).
Parkinson’s disease in 22q11.2 deletion syndrome survey
Do you have a patient with 22q11.2 deletion syndrome (22q11.2DS, previously known as DiGeorge or velocardiofacial syndrome) who has or might have Parkinson's disease? If yes, we invite you to fill out an anonymized easy-to-use clinical checklist by December 16, 2016. If interested, please contact Dr. Erik Boot, Clinical and Research Fellow, Toronto General Hospital, Toronto, ON, at firstname.lastname@example.org.
An increasing number of reports suggest that individuals with a 22q11.2 deletion have a significantly increased risk for developing early-onset Parkinson’s disease. However, it remains unclear when (age at onset) and how (presenting characteristics) Parkinson’s disease in 22q11.2DS may manifest. Similarly, disease progression has not yet been systematically evaluated.
The aim of this international collaborative research study is to compile a case series (aiming at n≥25) of individuals (living or deceased) to provide the first in-depth phenotypic characterization of Parkinson’s disease in 22q11.2DS. The results of this study will be important for informing genetic counselling and anticipatory care.
Ideally, we are looking for patients with a confirmed Parkinson’s disease diagnosis. However, we are aware that this diagnosis may be very difficult to confirm in some patients with 22q11.2DS in clinical practice. (For example, antipsychotic medication may delay the diagnosis by many years). Also, we do not want to exclude patients with related neurodegenerative disorders (e.g., multiple system atrophy). Therefore, we would rather discuss potential candidate cases on a case by case basis.
All data will be anonymized and published in aggregate. Participating clinicians/researchers will be acknowledged as a co-author on publications. Your participation is greatly appreciated.
Lecture series on Parkinson's disease launches
AMPARO: A NeuroMat network to empower persons with Parkinson's disease in shaping therapeutic strategies
The Research, Innovation and Dissemination Center for Neuromathematics has launched a network to promote the collaboration of people living with Parkinson's disease, families and health professionals to face clinical and research challenges associated with Parkinson’s disease. This initiative, called AMPARO in Portuguese, is coordinated by the NeuroMat investigator Maria Elisa Pimentel Piemonte, a physical therapist and professor at the University of São Paulo in Brazil.
The first lecture launched on October 24, 2016 with Michelle Hyczy de Siqueira Tosin. Tosin is a nurse from the International Center of Neurorehabilitation and Neuroscience SARAH, in Rio de Janeiro. The talk “How to improve the efficiency of antiparkinsonian medications through the better management” will be streamed online on YouTube.
AMPARO expects to build a shared set of evidence-based practices collaboratively built to establish a common understanding of challenges persons with Parkinson’s disease face in Brazil and to have an impact on clinical policies and research projects associated to this disease. According to Piemonte, the organizational ambition is to establish a “horizontal network,” in which everyone who is interested may provide inputs.
According to Piemonte, “The creation of this network rests upon involving people with Parkinson’s and relatives as fundamental partners in the challenge of improving services that target this disease, promoting a broad discussion on clinical strategies and the role of associations to support families.” A medium-term goal of AMPARO is to have an impact on the development of a specific line of care for Parkinson's disease in Brazil. This should be a participatory and integrated process, Piemonte added.
Michael J. Fox Foundation survey seeks clinician participants
The Michael J. Fox Foundation is surveying clinicians on their experiences with Rytary in order to gain a better understanding of the challenges associated with it, as well as benefits and side effects. Information gained from these surveys will be used to inform our educational, research funding and public policy efforts.
If you are interested in participating, please visit this link.
Thanks for your valuable input!
Tourettes Action offers non-financial support to researchers and students for studies
Interested in conducting Tourette Syndrome research? Tourettes Action (UK) offers non-financial support to researchers/research students wishing to recruit people for their research studies.
Tourette Syndrome is an inherited neurological condition causing involuntary and uncontrollable motor and vocal tics which can be painful, disabling and affect the quality of life of over 300,000 people in the UK.
There are many ways we can help to publicize your research project (newsletter, Facebook, Twitter, forums, email etc). Please contact Tourettes Action Research Manager Seonaid Anderson at Seonaid@tourettes-action.org.uk for more information.