Down syndrome: Issues to consider in a national registry, research database and biobank

摘要: As the quality of life for individuals with Down syndrome continues to improve due anticipatory healthcare, early intervention, mainstreaming in schools, and increased expectations, lack basic information regarding is being recognized, need facilitate research through a national registry, database biobank discussed. We believe that there should not be ownership samples information, but instead prefer stewardship benefit participants who provided them. endorse model data sample managers review board interface between investigators participants. Information would coded, only few know relationship codes identifying information. Research results once published included an online newsletter. If appropriate, individual shared A accountable participants, families, medical care providers, government, funding sources.