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The Gene Partnership starts with you!
In order to help us solve diseases like asthma, heart disease, autism, muscular dystrophy, and a multitude of other pediatric conditions, there is a need to rapidly collect and characterize samples and get them to researchers. Though many projects might be similar, very few can collect a sufficiently large and comprehensive collection of samples from kids and their families. We have learned that children are ideal subjects for genomics research, because they offer a unique chance to identify the contributions of genes to disease before a lifetime of environmental exposures and lifestyle habits compound health problems and obscure the picture.
The Gene Partnership is the first database that enables participating families to benefit promptly, directly, and confidentially from research findings by giving families the opportunity to enter into a partnership with our researchers.
It achieves this through:
- Giving participants the opportunity to sign up for a personally controlled health record (PCHR). The Gene Partnership PCHR is a computer system designed to give participants access to their research and health data, to communicate securely with research staff, and to potentially receive research results. This system is built on Indivo – a visionary, personally controlled health record system, invented at Children’s, that has been adopted by major corporations such as AT&T and Wal-Mart, as well as by Children’s itself. All personal health and research information is secured in this record.
- Creating a unique “research pager” technology that allows researchers and study staff to communicate confidentially with participants. When patient information is added to the study, it is stripped of its identifying information and folded into a large, secure database. As patterns emerge from the genetic data, researchers will use the research pager technology to match relevant results to each participant’s record. For example, TGP could alert parents to medications that may work specifically for their child or themselves or, possibly, to advise about risks the child might have for a particular disease. Any family who chooses to participate will have the option to decide to receive not only health alerts, but also project updates and invitations to enroll in new studies.
- Using our SafeGenes database to help provide insight into the scientific credibility and reportibility of specific research findings. SafeGenes is a one-of-a-kind database created by a team from Children’s Hospital and Harvard Medical School that incorporates reported genotype-phenotype associations from diverse data sources. This data is drawn from the medical literature and is compiled in order to support the Informed Cohort Oversight Board as they make reporting decisions for each finding, assuring that participants receive only findings that are appropriate and relevant.
Scientific Value
Many “adult onset” disorders such as heart disease begin their destructive course early in life. Samples and health data collected from children over time will illuminate the evolution of these diseases and pinpoint opportunities for prevention and early intervention. Thus, the Gene Partnership will benefit researchers studying childhood diseases and also those interested in adult conditions.
Most DNA databases provide a pinhole view of health and illness. They might offer only genomic data, only samples from isolated individuals, or only DNA from one moment in time. By contrast, the Gene Partnership employs the widest lens possible. It:
- Captures the vital information coded in genes and the treasure-trove of clinical data in electronic-medical records – from medications to family history to behaviors, such as regular exercise.
- Incorporates family history data so researchers can distinguish, for example, between an inherited predisposition to disease and mutations that result from environmental insults.
- Collects and updates participant information over years and decades. When scientists examine large populations over many years, they can probe the relationship between phenotypic data (symptoms, traits, lab values, etc.) and genotypic data to unravel the risk factors that contribute to disease.
- Provides analyzed, “research ready” genetic data and DNA samples, saving scientists precious time. This rich, contextual data will fuel genetic research at Children’s and beyond – driving medicine forward and changing the way studies are conducted.
We need your help as a research participant in order to make a difference for your child’s life and for the lives of countless other children across the world.
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