CPIRF: 10 Year Plan

Cerebral Palsy International Research Foundation: Our 10 Year Plan

New Focus areas: Neurobiology (prevention and regeneration), Transformational Technologies, Adults with CP, International Programs, Hausman Career Development Awards for Junior Investigators, Advocacy and Education

Thoughts of Mindy Aisen MD, CEO

Cerebral Palsy International Research Foundation, InC

We invite the research, clinical and CP community to

comment and give us feedback……………….

Founded in 1955, United Cerebral Palsy Research and Educational Foundation (UCPREF) has always stood for “hope through research" for all affected by cerebral palsy. UCPREF has supported research with international implications, including developing the vaccine for rubella, virtually eradicating a major cause of CP throughout the world. In 2008, we are now the Cerebral Palsy International Research Foundation in recognition of the international medical research efforts that are relevant to the cause, cure and evidence based care for those with cerebral palsy and related developmental disabilities but with the same roots, history and values associated with our past name.

Our rich history includes supporting efforts that substantially decreased the risk of Cerebral Palsy in full term infants. We also continue to support research on innovative therapies to improve strength, coordination and ambulation in children and adults with CP and related developmental disabilities.

It is now time to focus our resources on:

Preventing CP in low-weight premature and term babies, through research initiatives focused on:

1. Bench studies examining mechanisms of neurological damage.

2. Studies of neuroprotective pharmacological agents and strategies.

3. Studies of agents that may encourage neural regeneration (including growth factors, stem and cord blood cells).

4. Large epidemiological studies examining environmental, socioeconomic, and/or practice factors that may be contributing to brain damage in newborns.

5. Genomics and biomarker studies to identify babies at risk for CP before symptoms are manifested.

Improving motor and cognitive development in children with Cerebral Palsy by using therapeutic transformational technologies:

1. Supporting studies of “mass practice” and robotic therapy.

2. Exploring virtual reality techniques in conjunction with motor and intellectual learning.

3. Supporting studies of functional neuromuscular stimulation in combination with

   1. mass practice/robotics

   2. focal antispasticity treatment

   3. virtual reality/computer environment stimulation

4. Noninvasive Neuroimaging

   1. for early diagnosis (in the tangerine sized brain of the premature newborn)

   2. dynamic functional neuroimaging to ascertain the impact of pharmacological agents and experiential therapies (PT, OT, Speech, Robotics, FNS, VR) on focal brain activity.

Research for data required to meet the needs of Adults with CP:

The number of adults with CP is fast approaching the number of children with CP. They have complications that have been under-recognized, undocumented, and under-treated. Most adults with CP experience earlier onset of joint pain and arthritic complications than other adults. There are no clinical programs for adults with CP and medical education has not to date provided a forum for dealing with the needs of this community.

1. There is a need for long term planning when treating children with CP particularly as applies to invasive, permanent structural surgical interventions

2. There is a need for studying methods to keep adults with CP ambulatory and improve cardiovascular fitness.

3. Epidemiological studies are necessary to ascertain the magnitude of medical and orthopedic complications in this population.

4. Health services research is required to ascertain best practices and the impact of changing practice in Adults with CP.

Building human capital: the Hausman Early Career Development Awards

Providing salary support for MDs and PhD clinicians 2-5 years out of training to

pursue research in an area relevant to developmental disabilities, while continuing to spend time providing hands on clinical care to the developmentally disabled (ideally in an academic community).

International Programs

1. The Middle East Research Collaboration has been tremendously successful and needs to be expanded to include neighboring countries and US partnerships.

2. New collaborative clinical and medical academic relationships have been founded and sustained in Jordan and Israel. Rigorous clinical data has been collected and new discoveries relevant to new approaches to Physical Therapy interventions. Outreach is continuing to the nations of Morocco and Egypt.

3. A major pharmaceutical firm is cosponsoring with CPIRF a trial of a new medication to evaluate whether it helps adults with CP (occurring in Israel and Palestinian territories with input from American researchers and the Foundation)

4. Partnerships with the Niarchos Foundation are bringing Greek students to MIT to study rehabilitation engineering and new partnerships are being fostered with the Variety Children’s Lifeline Organization.

Advocacy and Education

1. The Foundation needs not only to supplement (decreasing and disproportionately low amount of) Federal Funding for research relevant to CP and related developmental medical conditions, it needs to advocate among policy makers to increase the amount of Federal Funding dedicated to CP.

2. We need to educate the medical community about gaps in best practices data in order to help investigators develop relevant new scientific research proposals to fill knowledge gaps. (this will vastly improve the quality of care for the community with CP)