Results 241 to 250 of about 499,297 (296)

Descriptive Epidemiology From the Myhre Syndrome Foundation Registry: The Value of Self‐Reported Data

American Journal of Medical Genetics Part C: Seminars in Medical Genetics, EarlyView.
ABSTRACT Myhre syndrome is an ultrarare genetic disease characterized by short stature, distinct craniofacial features, cardiovascular and respiratory fibrosis and stenosis, neurodevelopmental delays, autism, intellectual disability, and hearing loss. The natural history of Myhre syndrome is still not fully understood due to a small patient population ...
Mary K. Young, Armelle Pindon, Maggie R. Brand, Kate Wears, Katherine H. Young, Alyssa Mendel, Michael J. Lyons   +6 more
wiley   +1 more source

Milestone Attainment in Young Children With Arthrogryposis Multiplex Congenita: Developmental Profile and Associated Factors

American Journal of Medical Genetics Part C: Seminars in Medical Genetics, EarlyView.
ABSTRACT Evidence on developmental milestones in children with arthrogryposis multiplex congenita (AMC) under the age of five is scarce. This multisite cross‐sectional study described developmental status and examined factors associated with milestone attainment in 143 children aged 0–66 months from a pediatric AMC Registry.
Ahlam Zidan, Sophia C. Pasia, Emmanouil Rampakakis, Reggie Hamdy, Frank Rauch, Lauren C. Hyer, Joel Lerman, Haluk Altiok, Krister Freese, Cary Mielke, Sarah B. Nossov, Philip F. Giampietro, Thania Ordaz‐Robles, Noémi Dahan‐Oliel   +13 more
wiley   +1 more source

Recruiting children and young people with vision impairment for clinical research - experience from the SeeMyLife study. [PDF]

BMC Med Res Methodol
Gittel L, Finger RP, Richter V, Cadi A, Beck N, Colombo A, Gelžinis A, Gustafierro E, Incagli F, Kručaitė A, Lanza M, Leonardi M, Leroy BP, Nowakowska D, Nowomiejska K, Parmeggiani F, Pelletier V, Philippe A, Reffo ME, Slaghmuylder Y, Suppiej A, Laeng C, Žemaitienė R, Dollfus H, Terheyden JH, SeeMyLife consortium members.   +25 more
europepmc   +1 more source

The good, bad, and ugly of online recruitment of parents for health-related focus groups: lessons learned.

J Med Internet Res, 2013
Quach S, Pereira JA, Russell ML, Wormsbecker AE, Ramsay H, Crowe L, Quan SD, Kwong J.   +7 more
europepmc   +1 more source

Digital tools for recruitment and retention of participants in paediatric clinical research: a scoping review. [PDF]

Trials
Tan E, Loveys K, Ali W, McKinlay CJD, Dalziel SR.   +4 more
europepmc   +1 more source

Strategies for recruitment of adolescent girls into physical activity programmes: a systematic review and regression analysis. [PDF]

BMC Public Health
O'Brien T, D Darker C, Mockler D, M Barrett E.   +3 more
europepmc   +1 more source

Addressing the challenges of including older people with osteoarthritis and multi-morbidity in digitally enabled trials: a mixed methods Study Within a Project (TIPTOE SWAP)

Shepherd V, Prout H, Button K, Brookes-Howell L, Randell E, Lowe R, Nash S, Deere R, Busse M.   +8 more
europepmc   +1 more source