Massive U.S. children’s study needs major tweaks, report finds

first_imgA controversial plan to study the health of 100,000 U.S. babies to age 21 has some strong points—but also a host of weaknesses that could further delay its launch, an outside review has concluded. The critique from an Institute of Medicine (IOM) and National Research Council (NRC) panel raises questions about whether the National Children’s Study (NCS) can sustain the political support needed to assure funding for the ambitious effort, which has already cost $1 billion and could require billions more in coming years.NCS “offers enormous potential, but it also presents a large number of … challenges,” states the 16 June IOM/NRC report. To overcome them, IOM/NRC recommends that the study’s leader, the National Institute of Child Health and Human Development (NICHD), undertake some major changes, including fine-tuning the study’s guiding hypotheses and bolstering scientific input and oversight. And it should drop an existing plan to enroll nearly half of the children at birth, and instead enroll all of them earlier, during the mother’s pregnancy.“It’s not like [NICHD needs] to start at square zero again,” because much of the groundwork for NCS has already been laid, says panel chair Greg Duncan, an economist at the University of California, Irvine. But the needed changes would likely delay initial recruitment, now planned for 2015.Sign up for our daily newsletterGet more great content like this delivered right to you!Country *AfghanistanAland IslandsAlbaniaAlgeriaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBolivia, Plurinational State ofBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos (Keeling) IslandsColombiaComorosCongoCongo, The Democratic Republic of theCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuraçaoCyprusCzech RepublicDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland Islands (Malvinas)Faroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and Mcdonald IslandsHoly See (Vatican City State)HondurasHong KongHungaryIcelandIndiaIndonesiaIran, Islamic Republic ofIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People’s Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyan Arab JamahiriyaLiechtensteinLithuaniaLuxembourgMacaoMacedonia, The Former Yugoslav Republic ofMadagascarMalawiMalaysiaMaldivesMaliMaltaMartiniqueMauritaniaMauritiusMayotteMexicoMoldova, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorwayOmanPakistanPalestinianPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarReunionRomaniaRussian FederationRWANDASaint Barthélemy Saint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint Martin (French part)Saint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint Maarten (Dutch part)SlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwazilandSwedenSwitzerlandSyrian Arab RepublicTaiwanTajikistanTanzania, United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVenezuela, Bolivarian Republic ofVietnamVirgin Islands, BritishWallis and FutunaWestern SaharaYemenZambiaZimbabweI also wish to receive emails from AAAS/Science and Science advertisers, including information on products, services and special offers which may include but are not limited to news, careers information & upcoming events.Required fields are included by an asterisk(*)NCS grew out of a request from Congress, made 14 years ago, that the National Institutes of Health (NIH) follow a large group of children from birth to adulthood in a bid to understand how environmental factors, including social settings and chemical pollutants, influence health. Planners decided to recruit 100,000 women and their unborn babies by knocking on household doors in a random sample of about 100 U.S. counties. But this approach proved too expensive, so NICHD turned to other designs. Members of Congress expressed concern in 2012, after NICHD, having spent $1 billion, decided to pull the plug on 40 NCS sites run by academic investigators and turn over to large contractors the job of tracking the 4000 families it had already enrolled in a pilot study. In March 2013, Congress called for IOM to review the study and suggest improvements.In general, the IOM/NRC panel endorses the NCS concept. Similar studies are under way in Europe and Japan, it notes, but the U.S. version would be more comprehensive in part because researchers would collect extensive data on environmental exposures. The panel also agreed with NICHD’s decision to design the study as a “data collection platform” that will start out focused on testing just a few hypotheses—such as that exposure to kitchen dust exacerbates respiratory problems—and add more later. But these “exemplar hypotheses” need to be more scientifically robust, IOM/NRC found.The panel found fault, however, with how NCS planned to enroll subjects. Instead of enrolling 45,000 babies at birth and the same number before birth, the panel calculated the study could enroll 95,000 mothers during pregnancy for the same cost—if it dropped plans for separate studies of 10,000 women. Those smaller studies were to focus on particular questions such as preconception exposures and the effects of natural disasters. Enrolling siblings, as is planned, could also provide useful data on preconception exposures, the panel noted.  Such changes would enable NICHD to enroll participants for about $1.5 billion over 7 years, the panel estimates, with annual costs peaking at just over $300 million. (NIH is now allocating $165 million per year for the study.) The IOM/NRC total appears to put NCS on a lower cost path than earlier NIH estimates, which predicted the study could cost $3 billion. But the IOM/NRC estimate does not include costs such as archiving data and storing biological samples, the report notes. If NIH must further trim costs, the panels says it would be better to enroll fewer families than cut back on exposure measurements.The panel could not determine whether NICHD’s plan to enroll pregnant women through a sample of U.S. hospitals would yield a group as representative of the population as recruiting women through prenatal providers within the original 100 NCS counties. The problem is that “no such list [of all hospitals] exists,” Duncan says.  Scientific leadership of NCS is a major deficiency, the report finds. Although the study has various advisory committees, “the processes by which study decisions are made and vetted are opaque,” it says. NCS needs more expertise within its program office, the panel concludes, as well as a new outside scientific advisory group that has the authority to approve the study’s design.Such conclusions are vindication for some NCS critics, including academic scientists who were pushed out of the study 2 years ago. “From my point of view, this is an excellent report,” says pediatrician and epidemiologist Nigel Paneth of Michigan State University in East Lansing, who led a former NCS site in Detroit. “Its conclusions are essentially the same as mine. They’re just putting it more nicely.”Now that IOM/NRC has had its say, the question is whether NIH will embrace its recommendations—and whether Congress will be willing to keep funding the study.*Correction, 16 June, 4:35 p.m.: The report is from the National Research Council as well as the Institute of Medicine, both part of the National Academies.*Update, 16 June, 4:35 p.m.: NIH Director Francis Collins issued a statement in response to the report saying that it “raises significant concerns.” He is putting the main study on hold. A team of experts will meet in the coming weeks to advise Collins on whether the study is “actually feasible” given current budget constraints and if so, how to implement the recommendations. If not, the panel will look at “new methods to answer key research questions that are most important to pediatric health today.”last_img read more

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Ask Farnoosh: Saving for my child’s college education

first_imgDrew: I want to save money for my child’s college education with the goal of having enough money to pay for 100% of her college costs. Should I open a 529 account or Roth IRA or some other account? What if she doesn’t go to college? I’m worried a 529 account is too restrictive. I hear you, Drew. Who knows what the future will hold? You might see your daughter going to college, but depending on her interests and goals she may choose differently. Or, she may earn herself a full ride somewhere. Then what? Is a 529 plan a smart way to go?Maybe. Personally, I opened a 529 plan for my son. He’s only two years old and who knows what he’ll decide to do with his life come 2032. But we’re rolling the dice and feeling confident that he’ll want to follow in his mom and dad’s footsteps and go to Penn State (hint, hint, nudge, nudge). But even if he opts to start a business or go straight into the workforce after high school we trust we can transfer the funds to another beneficiary. Maybe a future sibling? Maybe I’ll decide to go to cooking school and learn to do more than boil water for pasta?And that’s the thing about 529s – the funds can be used quite flexibly and maybe more than one might assume. For one, you can change the beneficiary without consequence. If your daughter decides to forgo a higher education or doesn’t require the funds, you can change the plan’s recipient to another child, relative, friend, or even yourself if you have a hankering to go back to school.The savings can also apply towards any eligible institution of higher education, or, simply, a school that participates in federal student aid programs. That’s a lot of places, including traditional colleges, trade, career or technical schools and community colleges. [This site can help you quickly look up a school’s 529 eligibility.] Many foreign schools qualify, too.And while your daughter may not be set on going to college right away, she may warm up to the idea down the road or following a gap year [as Malia Obama is making so popular]. A 529 plan doesn’t have to get used as soon as your child graduates from high school. You can activate it at any time.In the end, if none of the above ends up mattering to you or your daughter, you may need to withdraw that money for non-educational purposes and be forced to pay taxes and a 10% penalty.Boo.If you think that’s likely, then the Roth individual retirement account (IRA), which you mention, may provide you with better options.  We know the account more commonly as mainly a savings vehicle for retirement whereby you can make penalty and tax-free withdrawals starting at age 59 ½.  So, assuming you’ll want money for retirement (and who doesn’t?), a Roth can be a fabulous way to save for those who qualify.But, if along the way, your daughter needs money for college, then as an exception, a Roth IRA can also serve as a means to pay for qualified education expenses. You can withdraw your contributions (not to be confused with your investment earnings) from the account at any time tax and penalty free.If your daughter doesn’t end up needing money for college, then that’s no problem. The Roth can go on to serve you in retirement still.Yet another option is to just begin investing in an “Anything Goes” diversified brokerage account, which you can use for whatever you or your daughter will need years from now. The downside is you’ll have to pay capital gains tax on withdrawals.Some parents also like using a “custodial account,” which is essentially a savings account that you, the parent, manage and control on behalf of your child until typically he or she reaches 18, 19 or 21 depending on the state. Whether you like it or not, the account irrevocably becomes your child’s property at that age (so, there’s that to think about.) If you were hoping your child would use that money for college and then she blows it on a new car (because she can), you might be wishing you’d gone in a different direction.And finally, finally, you can always mix it up, right?Creating a financial strategy that integrates all of above leaves you with a great deal of flexibility and covered bases. Maybe you save a little in a 529 to earn the tax benefit with the satisfaction in knowing you can always change the beneficiary, then open a Roth IRA because, well, you need money for retirement anyway…and last, save some in a brokerage and/or custodial account.Diversifying your savings approach for your daughter’s future might create that balancing act you crave, knowing all the uncertainties ahead.Good luck!Farnoosh Farnoosh Torabi is America’s leading personal finance authority hooked on helping Americans live their richest, happiest lives. From her early days reporting for Money Magazine to now hosting a primetime series on CNBC and writing monthly for O, The Oprah Magazine, she’s become our favorite go-to money expert and friend.Share this:Click to share on Twitter (Opens in new window)Click to share on Facebook (Opens in new window) Related Have a question for Farnoosh? You can submit  your questions via Twitter @Farnoosh, Facebook or email at editor_mint@intuit.com.center_img Post navigationlast_img read more

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