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Treating Family Members

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61. Voretigene neparvovec for treating inherited retinal dystrophies caused by RPE65 gene mutations

team 29 Evaluation committee members 29 NICE project team 29 Voretigene neparvovec for treating inherited retinal dystrophies caused by RPE65 gene mutations (HST11) © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 301 1 Recommendations Recommendations 1.1 Voretigene neparvovec is recommended, within its marketing authorisation, as an option for treating RPE65-mediated inherited retinal dystrophies in people (...) treatments currently available in the UK for RPE65-mediated IRD. Current management focuses on strategies to improve the use of remaining vision. This includes using low-vision aids, social and educational support, and specialised genetic counselling for people with the condition and their families. Care is provided as part of a specialised multidisciplinary service. Voretigene neparvovec for treating inherited retinal dystrophies caused by RPE65 gene mutations (HST11) © NICE 2019. All rights reserved

2019 National Institute for Health and Clinical Excellence - Highly specialised technology

62. Nusinersen for treating spinal muscular atrophy

treatments 7 The technology 8 Clinical trial evidence 8 The company's economic model 13 Results of the cost-effectiveness analysis 18 Other factors 19 End of life 23 Conclusion 24 4 Implementation 26 5 Appraisal committee members and NICE project team 27 Appraisal committee members 27 NICE project team 27 Nusinersen for treating spinal muscular atrophy (TA588) © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 281 1 (...) erely affects the quality of life of patients, carers and their families 3.3 The clinical and patient experts explained that most people with SMA need constant support. This can include full-time care and attention, needing physical effort (such as lifting and carrying) and causing loss of sleep for patients and carers, stress, and fear at loss of abilities. All these factors have a major effect on family members' health-related quality of life. The committee heard from parents and carers

2019 National Institute for Health and Clinical Excellence - Technology Appraisals

63. Ocrelizumab for treating primary progressive multiple sclerosis

ocrelizumab 5 3 Committee discussion 6 The condition and current care pathway 6 Clinical effectiveness 7 Cost effectiveness 10 Adverse events 11 Waning of treatment efficacy 12 Stopping treatment 13 Utility values 14 Cost-effectiveness estimates 16 Innovation 17 Conclusion 18 4 Implementation 19 5 Appraisal committee members and NICE project team 20 Appraisal committee members 20 NICE project team 20 Ocrelizumab for treating primary progressive multiple sclerosis (TA585) © NICE 2019. All rights reserved (...) the condition reduces what they are able to contribute to society. The committee noted the submissions it had received from patient and carer organisations, and comments received at consultation. These detailed how many people with primary progressive multiple sclerosis eventually need support and care from family members or friends, and that ocrelizumab has provided hope of slowing disability progression for people diagnosed with the condition. The committee concluded that primary progressive multiple

2019 National Institute for Health and Clinical Excellence - Technology Appraisals

64. Atezolizumab in combination for treating metastatic non-squamous non-small-cell lung cancer

therapy 20 Health-related quality of life 21 Cost-effectiveness results 22 End of life 23 Innovation 24 Other factors 24 Conclusion 25 4 Implementation 26 5 Appraisal committee members and NICE project team 27 Appraisal committee members 27 NICE project team 27 Atezolizumab in combination for treating metastatic non-squamous non-small-cell lung cancer (TA584) © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 281 1 (...) Atezolizumab in combination for treating metastatic non-squamous non-small-cell lung cancer Atezolizumab in combination for treating Atezolizumab in combination for treating metastatic non-squamous non-small-cell metastatic non-squamous non-small-cell lung cancer lung cancer T echnology appraisal guidance Published: 5 June 2019 www.nice.org.uk/guidance/ta584 © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y our

2019 National Institute for Health and Clinical Excellence - Technology Appraisals

65. Brentuximab vedotin for treating CD30-positive cutaneous T-cell lymphoma

and their families and carers. The committee concluded that CTCL significantly reduces patients' quality of life. There is an unmet need for more effectiv There is an unmet need for more effective treatment options e treatment options 3.2 There is no NICE guidance on treating CTCL. The disease can be divided into a number of subtypes, only some of which express the tumour marker CD30. CD30 is expressed in both primary cutaneous anaplastic large cell lymphoma and lymphomatoid papulosis, which together form (...) Brentuximab vedotin for treating CD30-positive cutaneous T-cell lymphoma Brentuximab v Brentuximab vedotin for treating edotin for treating CD30-positiv CD30-positive cutaneous T e cutaneous T -cell -cell lymphoma lymphoma T echnology appraisal guidance Published: 24 April 2019 www.nice.org.uk/guidance/ta577 © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y our responsibility our responsibility The recommendations

2019 National Institute for Health and Clinical Excellence - Technology Appraisals

66. Brigatinib for treating ALK-positive advanced non-small-cell lung cancer after crizotinib

Health-related quality of life 13 Resource use and costs 14 Cost-effectiveness results 15 End of life 16 Innovation 17 Conclusion 18 4 Implementation 19 5 Appraisal committee members and NICE project team 20 Appraisal committee members 20 NICE project team 20 Brigatinib for treating ALK-positive advanced non-small-cell lung cancer after crizotinib (TA571) © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 211 1 (...) . Brigatinib for treating ALK-positive advanced non-small-cell lung cancer after crizotinib (TA571) © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 19 of 215 5 Appr Appraisal committee members and NICE project team aisal committee members and NICE project team Appraisal committee members The 4 technology appraisal committees are standing advisory committees of NICE. This topic was considered by committee D. Committee

2019 National Institute for Health and Clinical Excellence - Technology Appraisals

67. Benralizumab for treating severe eosinophilic asthma

Information about benralizumab 7 3 Committee discussion 8 New treatment option 8 Clinical management and comparators 9 Clinical effectiveness 11 The company's economic model 15 Clinical inputs to the model 16 The company's updated base-case economic analysis 17 Innovation 20 4 Implementation 21 5 Appraisal committee members and NICE project team 22 Appraisal committee members 22 NICE project team 22 Update information 23 Benralizumab for treating severe eosinophilic asthma (TA565) © NICE 2019. All rights (...) for treating severe eosinophilic asthma (TA565) © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Last updated September 2019 Page 21 of 235 5 Appr Appraisal committee members and NICE project team aisal committee members and NICE project team Appraisal committee members The 4 technology appraisal committees are standing advisory committees of NICE. This topic was considered by committee A. Committee members are asked to declare

2019 National Institute for Health and Clinical Excellence - Technology Appraisals

68. Darvadstrocel for treating complex perianal fistulas in Crohn's disease

for research 21 5 Appraisal committee members and NICE project team 22 Appraisal committee members 22 NICE project team 22 Darvadstrocel for treating complex perianal fistulas in Crohn’s disease (TA556) © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 231 1 Recommendations Recommendations 1.1 Darvadstrocel is not recommended, within its marketing authorisation, for previously treated complex perianal fistulas in adults (...) Darvadstrocel for treating complex perianal fistulas in Crohn's disease Darvadstrocel for treating comple Darvadstrocel for treating complex x perianal fistulas in Crohn perianal fistulas in Crohn’s disease ’s disease T echnology appraisal guidance Published: 9 January 2019 nice.org.uk/guidance/ta556 © NICE 2019. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y our responsibility our responsibility The recommendations

2019 National Institute for Health and Clinical Excellence - Technology Appraisals

69. WITHDRAWN: Interventions for treating obesity in children. (Full text)

checked. No language restrictions were applied.We selected randomised controlled trials (RCTs) of lifestyle (i.e. dietary, physical activity and/or behavioural therapy), drug and surgical interventions for treating obesity in children (mean age under 18 years) with or without the support of family members, with a minimum of six months follow up (three months for actual drug therapy). Interventions that specifically dealt with the treatment of eating disorders or type 2 diabetes, or included (...) WITHDRAWN: Interventions for treating obesity in children. Child and adolescent obesity is increasingly prevalent, and can be associated with significant short- and long-term health consequences.To assess the efficacy of lifestyle, drug and surgical interventions for treating obesity in childhood.We searched CENTRAL on The Cochrane Library Issue 2 2008, MEDLINE, EMBASE, CINAHL, PsycINFO, ISI Web of Science, DARE and NHS EED. Searches were undertaken from 1985 to May 2008. References were

2019 Cochrane PubMed

70. Ocrelizumab for treating relapsing?remitting multiple sclerosis

responsible for their care thinks that ocrelizumab is the right treatment, it should be available for use, in line with NICE's recommendations. Ocrelizumab for treating relapsing–remitting multiple sclerosis (TA533) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 20 of 225 5 Appr Appraisal committee members and NICE project team aisal committee members and NICE project team Appraisal committee members The 4 technology (...) Ocrelizumab for treating relapsing?remitting multiple sclerosis Ocrelizumab for treating Ocrelizumab for treating relapsing–remitting multiple sclerosis relapsing–remitting multiple sclerosis T echnology appraisal guidance Published: 25 July 2018 nice.org.uk/guidance/ta533 © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y our responsibility our responsibility The recommendations in this guidance represent the view

2018 National Institute for Health and Clinical Excellence - Technology Appraisals

71. Beta interferons and glatiramer acetate for treating multiple sclerosis

and glatiramer acetate for treating multiple sclerosis (TA527) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 29Appraisal committee members 28 NICE project team 28 Beta interferons and glatiramer acetate for treating multiple sclerosis (TA527) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 4 of 29This guidance replaces TA32. 1 1 (...) Beta interferons and glatiramer acetate for treating multiple sclerosis Beta interferons and glatir Beta interferons and glatiramer acetate amer acetate for treating multiple sclerosis for treating multiple sclerosis T echnology appraisal guidance Published: 27 June 2018 nice.org.uk/guidance/ta527 © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y our responsibility our responsibility The recommendations

2018 National Institute for Health and Clinical Excellence - Technology Appraisals

72. Dinutuximab beta for treating neuroblastoma

and debilitating, with severe and long-lasting side effects (including hearing loss, organ dysfunction, sterility, lack of growth, early onset of puberty, permanent disability, and secondary malignancies). The clinical and patient experts stated that a child's death has a significant effect on family members. The committee noted that treatment can involve many hospital visits and stays causing disruption to school, work and family life. It understood that parents and carers also have anxiety, emotional (...) acknowledged that there were uncaptured Dinutuximab beta for treating neuroblastoma (TA538) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 20 of 25health-related benefits. These included reduced quality of life because of the effect of stress and depression caused by the disease on young patients and their families, as well as the devastating effects of bereavement on families. It discussed the need to balance

2018 National Institute for Health and Clinical Excellence - Technology Appraisals

73. Dupilumab for treating moderate to severe atopic dermatitis

and NICE project team 20 Appraisal committee members 20 NICE project team 20 Dupilumab for treating moderate to severe atopic dermatitis (TA534) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 211 1 Recommendations Recommendations 1.1 Dupilumab is recommended as an option for treating moderate to severe atopic dermatitis in adults, only if: the disease has not responded to at least 1 other systemic therapy (...) Dupilumab for treating moderate to severe atopic dermatitis Dupilumab for treating moder Dupilumab for treating moderate to ate to se sev vere atopic dermatitis ere atopic dermatitis T echnology appraisal guidance Published: 1 August 2018 nice.org.uk/guidance/ta534 © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y our responsibility our responsibility The recommendations in this guidance represent the view of NICE

2018 National Institute for Health and Clinical Excellence - Technology Appraisals

74. Lenvatinib and sorafenib for treating differentiated thyroid cancer after radioactive iodine

Resource use 16 Treatment after disease progression 17 Revised base case 17 Cost-effectiveness results 18 Uncaptured benefits 18 End of life 19 Conclusions 20 Other factors 22 4 Implementation 23 5 Appraisal committee members and NICE project team 24 Appraisal committee members 24 NICE project team 24 Lenvatinib and sorafenib for treating differentiated thyroid cancer after radioactive iodine (TA535) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms (...) Lenvatinib and sorafenib for treating differentiated thyroid cancer after radioactive iodine L Len envatinib and sor vatinib and sorafenib for treating afenib for treating differentiated th differentiated thyroid cancer after yroid cancer after r radioactiv adioactive iodine e iodine T echnology appraisal guidance Published: 8 August 2018 nice.org.uk/guidance/ta535 © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y

2018 National Institute for Health and Clinical Excellence - Technology Appraisals

75. Avelumab for treating metastatic Merkel cell carcinoma

6 Appraisal committee members and NICE project team 23 Appraisal committee members 23 NICE project team 23 Avelumab for treating metastatic Merkel cell carcinoma (TA517) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 3 of 241 1 Recommendations Recommendations 1.1 Avelumab is recommended as an option for treating metastatic Merkel cell carcinoma in adults, only if they have had 1 or more lines of chemotherapy (...) Avelumab for treating metastatic Merkel cell carcinoma A Av velumab for treating metastatic Merk elumab for treating metastatic Merkel el cell carcinoma cell carcinoma T echnology appraisal guidance Published: 11 April 2018 nice.org.uk/guidance/ta517 © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of- rights).Y Y our responsibility our responsibility The recommendations in this guidance represent the view of NICE, arrived

2018 National Institute for Health and Clinical Excellence - Technology Appraisals

76. Eribulin for treating locally advanced or metastatic breast cancer after 1 chemotherapy regimen

://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 2 of 17Contents Contents 1 Recommendations 4 2 The technology 6 3 Committee discussion 7 Symptoms and management of advanced breast cancer 7 Clinical trial evidence 8 The economic model 11 Clinical parameters 11 Costs 14 Cost-effectiveness estimates 14 End of life 15 Other factors 15 4 Appraisal committee members and NICE project team 16 Appraisal committee members 16 NICE project team 16 Eribulin for treating locally advanced or metastatic breast (...) and convenient administration method. However, the committee concluded that it could not identify any specific health-related benefit that had not already been captured in the QAL Y calculation. Eribulin for treating locally advanced or metastatic breast cancer after 1 chemotherapy regimen (TA515) © NICE 2018. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and- conditions#notice-of-rights). Page 15 of 174 4 Appr Appraisal committee members and NICE project team aisal

2018 National Institute for Health and Clinical Excellence - Technology Appraisals

77. Open letter from academics, practitioners, students and members of the public to the British Medical Association, the British Medical Journal publishing group, and the British Association of Sports and Exercise Medicine regarding editorial governance of t

Open letter from academics, practitioners, students and members of the public to the British Medical Association, the British Medical Journal publishing group, and the British Association of Sports and Exercise Medicine regarding editorial governance of t Open letter from academics, practitioners, students and members of the public to the British Medical Association, the British Medical Journal publishing group, and the British Association of Sports and Exercise Medicine regarding editorial (...) makes its decisions about which papers to free up. Finally, you ask about possible conflict of interests. In order to respond to these concerns, I asked our publisher of BJSM (Ms Janet O’Flaherty) to update me on your complaints leading up to this open letter, I reviewed the articles you highlight, I discussed your concerns with senior members of BMJ staff, and I had a teleconference with Professor Khan (on Tuesday 16 th October) as well as further email exchanges. Governance of decision making

2018 British Journal of Sports Medicine Blog

78. Impact of medical assistance in dying on family and friends

clear procedures to follow, and shared responsibilities between patients, family members, and healthcare providers (1). In several studies, the family and friends of patients who requested medical assistance in dying had less traumatic grief symptoms compared to family and friends of patients who died of natural causes (2-4). However, other studies have shown a higher prevalence of post-traumatic stress disorder (PTSD) and depression among family members or friends witnessing medical assistance (...) in dying (5). Some studies found that the opportunity to discuss death freely and extensively in an open atmosphere with a loved one may make it easier to come to terms with an impending death (4, 6-8). Acknowledgement of the experiences of family members should be an essential component of all research investigating medical assistance in dying (1). Note: Studies included in this review use the terms “medical assistance in dying”, “euthanasia”, “assisted suicide”, “physician-assisted suicide

2017 Ontario HIV Treatment Network

79. Family-focused prevention to improve cognitive, educational, and social-emotional development of immigrant children and adolescents

(e.g., programs for delinquent immigrant youth or treatment of mental disorders in immigrant youth). 2. Family-focused: All programs have to apply a family-focused approach, which means that family members or other caregivers are included in an intervention that ultimately aims to improve child development. The program can either be implemented with family members alone or as a combined child- and parent-program (e.g., parent training programs, multi-family group intervention, parent-adolescent (...) Family-focused prevention to improve cognitive, educational, and social-emotional development of immigrant children and adolescents The Campbell Collaboration | www.campbellcollaboration.org Family-focused prevention to improve cognitive, educational, and social-emotional development of immigrant children and adolescents: a systematic review Louisa S. Arnold, Andreas Beelmann, and Douglas Coatsworth Submitted to the Coordinating Group of: Crime and Justice Education Disability International

2017 Campbell Collaboration

80. Should family doctors treat opioid addiction?

Should family doctors treat opioid addiction? The AFP Community Blog: Should family doctors treat opioid addiction? | Monday, September 19, 2016 - Jennifer Middleton, MD, MPH The physicians in the office where I practice recently received the opportunity to train for a Drug Abuse Treatment Act (DATA) waiver for buprenorphine prescribing. A lively discussion among us ensued, with a few of us willing to be trained but the rest uncomfortable with the idea. As I've discussed this issue with others (...) , it seems that many family physicians have strong feelings about not prescribing buprenorphine. The common argument seems to be that these often complex patients should be left to addiction specialists to treat. Barriers cited in the medical literature to physician prescribing of buprenorphine include but also " ." 40% of physicians in a 2013 survey . In the September 1 issue of AFP , though, physicians from the Robert Graham Center argue that . They cite a in treating patients with opioid addiction

2016 The AFP Community Blog

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