LDA Research Ltd

Great news from the NHS today, which we highlighted in August in our blog in relation to Niemann-Pick UK (NPUK): "The aim of this initiative (‘Screening Saves Lives’) was to raise awareness and ensure the UK government sees the benefit of adding more conditions to the UK newborn screening programme. Currently the blood spot/heel prick test checks for 9 rare conditions in the UK, far less than many other high-income countries. Italy for example, screen their babies for 43 conditions, Iceland 47, and the US up to 59." It is great to see that this study will look to increase the number of tests being conducted on newborns, especially for rare diseases, and we look forward to this being rolled out across the UK. Read our blog here: https://lnkd.in/eTzuZCiz More information on the study: https://lnkd.in/e_iVYB9C Find out about the newborn screening collaborative: https://lnkd.in/eWCJian5

LDA Research would like to wish everyone a very happy Christmas and to thank all those who have collaborated with our medical market research this year. We look forward to bringing you our round up of all the new discoveries, treatments and advances in medicine this year in our January blog.  The LDA Research team provides qualitative data related to global health technology, medical device manufacturing, primary care, and pharmaceutical products. Often our work takes us into the minutiae of patient behaviour, tech implementation or communications. It’s refreshing and inspiring, at the start of a busy new year, to get an overview of the extraordinary research work taking place across healthcare.

GeneDx pushes for faster rare disease diagnosis Genomic testing could diagnose rare diseases within weeks, but misconceptions are slowing progress, GeneDx CEO says. Read in Morning Brew: https://lnkd.in/e9AuJ_f7

This Christmas we are supporting two charities, the Alzheimer’s Society and the Turner Syndrome Support Society (UK)

While Bella got a diagnosis for her rare growth condition SHORT syndrome, one of only 50 people worldwide, her mother Philippa said there’s no real community or support groups to join and is determined to raise awareness of the condition. #raredisease #medicalmarketresearch #SHORT #community

LDA Research have analysed the strengths and weaknesses of online methodology in medical market research from the perspective of participants, clients and researchers, and have organised these into ‘pros and cons’ to see the impact video interviews is having on our work. #MedicalMarketResearchModerator #SuccessfulResearchInterviews #OnlineInterviews #PatientFeedback #News https://lnkd.in/eDadcETQ

Leigh Hart, a senior moderator at LDA Research, shares insights into the art of medical market research moderation #medicalmarketresearch #moderation #healthcare https://lnkd.in/ey_UdWm3

Actor Colin Farrell, whose son was born with Angelman syndrome a rare neuro-genetic disorder, has launched the Colin Farrell Foundation, to provide support for adult children who have an intellectual disability through advocacy, education and innovative programs. He is an active member of the Angelman community. Angelman syndrome is a rare genetic condition that affects the nervous system and causes severe physical and learning disabilities. His son James, aged 20, is nonverbal, and will need support throughout his life. ‘Once your child turns 21, they’re kind of on their own,’ Farrell says. ‘All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and more often than not is left behind.’ Read in The Guardian: https://lnkd.in/eP6dUBki #raredisease #medicalmarketresearch #angelmansyndrome #colinfarrellfoundation

This month LDA Research collaborates with Megan Nolan of Rare Parenting discovering her experience of caring for her son with the rare FOXG1 syndrome and the difficulties they have faced As many as 200 million children globally have a rare disease, yet most aren’t diagnosed for years after birth. Instead, parents face an array of difficult symptoms often dismissed by doctors as “typical” developmental delays. In honor of FOXG1 Syndrome Awareness Month this November, we’ll look at this disease as an example. I'm the mother to a little boy with FOXG1 Syndrome, and I, too, was once dismissed by doctors—to the point where I felt powerless and alone, with nowhere to turn to help my sick baby. https://lnkd.in/e4GEXKnY #FOXG1 #RareParenting #DisabilityAdvocacy #CareGiverRights

Actor Colin Farrell, whose son was born with Angelman syndrome a rare neuro-genetic disorder, has launched the Colin Farrell Foundation, to provide support for adult children who have an intellectual disability through advocacy, education and innovative programs. He is an active member of the Angelman community. Angelman syndrome is a rare genetic condition that affects the nervous system and causes severe physical and learning disabilities. His son James, aged 20, is nonverbal, and will need support throughout his life. ‘Once your child turns 21, they’re kind of on their own,’ Farrell says. ‘All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and more often than not is left behind.’ Read in The Guardian: https://lnkd.in/eP6dUBki #raredisease #medicalmarketresearch #angelmansyndrome #colinfarrellfoundation