Magazine article The Exceptional Parent

Registries for All: We Need Direct Involvement with the "Science" of Discovering Interventions for Our Disabilities and Diseases by Making Decisions about Who Can Use Our Data, for What Purpose, and When

Magazine article The Exceptional Parent

Registries for All: We Need Direct Involvement with the "Science" of Discovering Interventions for Our Disabilities and Diseases by Making Decisions about Who Can Use Our Data, for What Purpose, and When

Article excerpt

Exceptional parents of exceptional children face numerous challenges. To address these challenges most effectively, parents, clinicians, and researchers must work together to understand the causes of health conditions; in turn, sharing information about conditions and the lived experience can accelerate the development of appropriate interventions. Even common conditions such as autism, epilepsy, or hearing loss, to name just a few, will benefit from information sharing.

But how can this information be shared, and with whom? It is not easy for parents to get the information about their child's condition to a researcher. Christine Vocke, the mother of a now adult child says:

  My son Andrew was born with cerebral palsy and hydrocephalus. He
  progressed to age four and a half with few challenges, until he
  began to have seizures. At that point, my smart little boy, who
  could even read early, began to regress. He is now, at age 25,
  able to function at about the level of someone less than half his
  age. Through all of these years we have tried drugs, various
  behavioral therapies, the ketogenic diet, and more. Like many
  parents of special needs kids, we had to navigate all of this on
  our own. I really wish someone was compiling information on
  Andrew's experience with that of other children in similar
  situations. No one did, so in addition to trying to alleviate his
  suffering, I kept records and tried to find ways to compare our
  experience with others.
  But no researcher or clinician wanted to analyze these experiences
  --whether the diet was working, whether drug doses needed to be
  changed. I feel like a lot of evidence was lost. Maybe researchers
  would like to know too, but there was no place to record this
  information--no registry or databases.

It is probable that Andrew's doctors would have liked to gather and use the information that Christine is talking about. A "learning healthcare system" would benefit Andrew and all other children. But collecting information like this has been challenging because of the medical system's inability to capture the information, and the difficulty the system has had in dealing with society's many questions about how to regulate access to health information. At the same time, many researchers wish more people would share their data in clinical trials. Participation in clinical trials in the USA is dismally low--around five percent. Medical researchers often describe the problem of finding individuals for these studies as "finding a needle in a haystack." To this we say, look at all the readers of Exceptional Parent. There are so many of us; the haystack is made of needles--no need to search!

Collecting health information on our children has been described as too costly, too problematic (because of its volume), or too difficult (because of the hurdles of informed consent for this sensitive medical data). But these criticisms are losing steam. Lately, there has been a change from the idea that research defines what kind of people are needed, to the idea that people define what research is needed.

This change in thought has been occurring within medical research institutions and has led to the creation of separate registries within each institution that support their own research. …

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