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REiNS Publications


REiNS has published recommendations in three supplements in the journal Neurology.  Click these links to access the full supplements:


Supplement I (2013)

Supplement II (2016)

Supplement III (2021)


 

REiNS Publications Listed by Topic:

 

About REiNS

 

Achieving consensus for clinical trials: The REiNS International Collaboration

Plotkin SR, Blakeley JO, Dombi E, Fisher MJ, Hanemann CO, Walsh KS, Wolters PL, Widemann BC. Achieving consensus for clinical trials: the REiNS International Collaboration. Neurology. 2013;81(21 Suppl 1):S1-5; doi:10.1212/01.wnl.0000435743.49414.b6

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

                                                                

Conclusions and future directions for the REiNS International Collaboration

Widemann BC, Blakeley JO, Dombi E, Fisher MJ, Hanemann CO, Walsh KS, Wolters PL, Plotkin SR. Conclusions and future directions for the REiNS International Collaboration. Neurology. 2013;81(21 Suppl 1):S41-4; doi:10.1212/01.wnl.0000435748.79908.c5

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN


Consensus for NF clinical trials: Recommendations of the REiNS collaboration (Supplement II)

Widemann BC, Plotkin SR. Consensus for NF clinical trials: Recommendations of the REiNS collaboration (Supplement II). Neurology. 2016;87(7 Supplement 1):S1-S3; doi:10.1212/WNL.0000000000002930

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN


Neurofibromatosis Clinical Trials—REiNS Collaboration 2020 Recommendations: Looking Back and Moving Ahead

Gross AM, Plotkin SR, Widemann BC, on behalf of the REiNS International Collaboration. Neurofibromatosis Clinical Trials—REiNS Collaboration 2020 Recommendations: Looking Back and Moving Ahead. Neurology. 2021;97(7 Supplement 1):S1-S3; doi:10.1212/WNL.0000000000012429

Full Text (Web)            Full Text (PDF)      NF1  NF2  SWN

 

Biomarkers

 

Current status and recommendations for biomarkers and biobanking in neurofibromatosis

Hanemann CO, Blakeley JO, Nunes FP, Robertson K, Stemmer-Rachamimov A, Mautner V, Kurtz A, Ferguson M, Widemann BC, Evans DG, Ferner R, Carroll SL, Korf B, Wolkenstein P, Knight P, Plotkin SR, on behalf of the REiNS International Collaboration. Current status and recommendations for biomarkers and biobanking in neurofibromatosis. Neurology. 2016;87(7 Suppl 1):S40-8; doi:10.1212/WNL.0000000000002932

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

 

Genotype-Phenotype Correlations in Neurofibromatosis and Their Potential Clinical Use

Bettegowda C, Upadhayaya M, Evans DG, Kim A, Mathios D, Hanemann CO, on behalf of the REiNS International Collaboration.Genotype-Phenotype Correlations in Neurofibromatosis and Their Potential Clinical Use. Neurology. 2021;97(7 Suppl 1):S91-S98; doi:10.1212/WNL.0000000000012436

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2

 

Cutaneous Neurofibromas

 

Perspective of Adults With Neurofibromatosis 1 and Cutaneous Neurofibromas: Implications for Clinical Trials

Cannon A, Pichard DC, Wolters PL, Adsit S, Erickson G, Lessing AJ, Li P, Narmore W, Röhl C, Rosser T, Widemann BC, Blakeley JO, Plotkin SR, on behalf of the REiNS International Collaboration. Perspective of Adults With Neurofibromatosis 1 and Cutaneous Neurofibromas: Implications for Clinical Trials. Neurology. 2021;97(7 Suppl 1):S15-S24; doi:10.1212/WNL.0000000000012425

Abstract            Full Text (Web)             Full Text (PDF)      NF1 

 

Measuring the Effect of Cutaneous Neurofibromas on Quality of Life in Neurofibromatosis Type 1

Maguiness S, Berman Y, Rubin N, Dodds M, Plotkin SR, Wong C, Moertel C, on behalf of the REiNS International Collaboration. Measuring the Effect of Cutaneous Neurofibromas on Quality of Life in Neurofibromatosis Type 1. Neurology. 2021;97(7 Suppl 1):S25-S31; doi:10.1212/WNL.0000000000012427

Abstract            Full Text (Web)             Full Text (PDF)      NF1 

 

Validating Techniques for Measurement of Cutaneous Neurofibromas: Recommendations for Clinical Trials

Thalheimer RD, Merker VL, Ly KI, Champlain A, Sawaya J, Askenazi NL, Herr HP, Da JLW, Jordan JT, Muzikansky A, Pearce EM, Sakamoto FH, Blakeley JO, Anderson RR, Plotkin SR, on behalf of the REiNS International Collaboration. Validating Techniques for Measurement of Cutaneous Neurofibromas: Recommendations for Clinical Trials. Neurology. 2021;97(7 Suppl 1):S32-S41; doi:10.1212/WNL.0000000000012428 

Abstract            Full Text (Web)             Full Text (PDF)      NF1 

 

Status and Recommendations for Incorporating Biomarkers for Cutaneous Neurofibromas Into Clinical Research

Wallis D, Stemmer-Rachamimov A, Adsit S, Korf B, Pichard D, Blakeley J, Sarin KY, on behalf of the REiNS International Collaboration. Status and Recommendations for Incorporating Biomarkers for Cutaneous Neurofibromas Into Clinical Research. Neurology. 2021;97(7 Suppl 1):S42-S49; doi:10.1212/WNL.0000000000012426

Abstract            Full Text (Web)             Full Text (PDF)      NF1  

 

Functional Outcomes

 

Functional outcome measures for NF1-associated optic pathway glioma clinical trials

Fisher MJ, Avery RA, Allen JC, Ardern-Holmes SL, Bilaniuk LT, Ferner RE, Gutmann DH, Listernick R, Martin S, Ullrich NJ, Liu GT, for the REiNS International Collaboration. Functional outcome measures for NF1-associated optic pathway glioma clinical trials. Neurology. 2013;81(21 Suppl 1):S15-24; doi:10.1212/01.wnl.0000435745.95155.b8

Abstract            Full Text (Web)             Full Text (PDF)      NF1 

 

Hearing and facial function outcomes for neurofibromatosis 2 clinical trials

Plotkin SR, Ardern-Holmes SL, Barker FG, Blakeley JO, Evans DG, Ferner RE, Hadlock TA, Halpin C, for the REiNS International Collaboration. Hearing and facial function outcomes for neurofibromatosis 2 clinical trials. Neurology. 2013;81(21 Suppl 1):S25-32; doi: 10.1212/01.wnl.0000435746.02780.f6

Abstract            Full Text (Web)             Full Text (PDF)      NF2

 

Sleep and pulmonary outcomes for clinical trials of airway plexiform neurofibromas in NF1

Plotkin SR, Davis SD, Robertson KA, Akshintala S, Allen J, Fisher MJ, Blakeley JO, Widemann BC, Ferner RE, Marcus CL, for the REiNS International Collaboration. Sleep and pulmonary outcomes for clinical trials of airway plexiform neurofibromas in NF1. Neurology. 2016;87(7 Suppl 1):S13-20; doi:10.1212/WNL.0000000000002933

Abstract            Full Text (Web)             Full Text (PDF)      NF1 

 

Reliability of Handheld Dynamometry to Measure Focal Muscle Weakness in Neurofibromatosis Types 1 and 2

Akshintala S, Khalil N, Yohay K, Muzikansky A, Allen J, Yaffe A, Gross AM, Fisher MJ, Blakeley JO, Oberlander B, Pudel M, Engelson C, Obletz J, Mitchell C, Widemann BC, Stevenson DA, Plotkin SR, on behalf of the REiNS International Collaboration. Reliability of Handheld Dynamometry to Measure Focal Muscle Weakness in Neurofibromatosis Types 1 and 2. Neurology. 2021;97(7 Suppl 1):S99-S110; doi:10.1212/WNL.0000000000012439

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2

 

Imaging

 

Recommendations for imaging tumor response in neurofibromatosis clinical trials

Dombi E, Ardern-Holmes SL, Babovic-Vuksanovic D, Barker FG, Connor S, Evans DG, Fisher MJ, Goutagny S, Harris GJ, Jaramillo D, Karajannis MA, Korf BR, Mautner V, Plotkin SR, Poussaint TY, Robertson K, Shih CS, Widemann BC, for the REiNS International Collaboration. Recommendations for imaging tumor response in neurofibromatosis clinical trials. Neurology. 2013;81(21 Suppl 1):S33-40; doi:10.1212/01.wnl.0000435744.57038.af

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

 

Current whole-body MRI applications in the neurofibromatosis: NF1, NF2, and schwannomatosis

Ahlawat S, Fayad LM, Khan MS, Bredella MA, Harris GJ, Evans DG, Farschtschi S, Jacobs MA, Chhabra A, Salamon JM, Wenzel R, Mautner VF, Dombi E, Cai W, Plotkin SR, Blakeley JO. Current whole-body MRI applications in the neurofibromatoses: NF1, NF2, and schwannomatosis. Neurology. 2016;87(7 Suppl 1):S31-9; doi:10.1212/WNL.0000000000002929

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

 

Imaging Evaluation of Plexiform Neurofibromas in Neurofibromatosis Type 1: A Survey-Based Assessment

Ahlawat S, Ly KI, Fayad LM, Fisher MJ, Lessing AJ, Berg DJ, Salamon JM, Mautner VF, Babovic-Vuksanovic D, Dombi E, Harris G, Plotkin SR, Blakeley J, on behalf of the REiNS International Collaboration. Imaging Evaluation of Plexiform Neurofibromas in Neurofibromatosis Type 1: A Survey-Based Assessment. Neurology. 2021;97(7 Suppl 1):S111-S119; doi:10.1212/WNL.0000000000012437

Abstract            Full Text (Web)             Full Text (PDF)      NF1

 

Neurocognitive Outcomes

 

Neurocognitive outcomes in neurofibromatosis clinical trials: Recommendations for the domain of attention

Walsh KS, Janusz J, Wolters PL, Martin S, Klein-Tasman BP, Toledo-Tamula MA, Thompson HL, Payne JM, Hardy KK, de Blank P, Semerjian C, Gray LS, Solomon SE, Ullrich N, for the REiNS International Collaboration. Neurocognitive outcomes in neurofibromatosis clinical trials: Recommendations for the domain of attention. Neurology. 2016;87(7 Suppl 1):S21-30; doi:10.1212/WNL.0000000000002928

Abstract            Full Text (Web)             Full Text (PDF)      NF1 

 

Recommendations for Social Skills End Points for Clinical Trials in Neurofibromatosis Type 1

Janusz JA, Klein-Tasman BP, Payne JM, Wolters PL, Thompson HL, Martin S, de Blank P, Ullrich N, Del Castillo A, Hussey M, Hardy KK, Haebich K, Rosser T, Toledo-Tamula MA, Walsh KS, on behalf of the REiNS International Collaboration. Recommendations for Social Skills End Points for Clinical Trials in Neurofibromatosis Type 1. Neurology. 2021;97(7 Suppl 1):S73-S80; doi:10.1212/WNL.0000000000012422

Abstract            Full Text (Web)             Full Text (PDF)      NF1

 

Recommendations for Measurement of Attention Outcomes in Preschoolers With Neurofibromatosis

Klein-Tasman BP, Lee K, Thompson HL, Janusz J, Payne JM, Pardej S, de Blank P, Kennedy T, Janke KM, Castillo AD, Walsh KS, on behalf of the REiNS International Collaboration. Recommendations for Measurement of Attention Outcomes in Preschoolers With Neurofibromatosis. Neurology. 2021;97(7 Suppl 1):S81-S90; doi:10.1212/WNL.0000000000012423

Abstract            Full Text (Web)             Full Text (PDF)      NF1

 

Patient Engagement

 

Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement: Lessons From REiNS

Merker VL, Lessing AJ, Moss I, Hussey M, Oberlander B, Rose T, Thalheimer R, Wirtanen T, Wolters PL, Gross AM, Plotkin SR, on behalf of the REiNS International Collaboration. Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement: Lessons From REiNS. Neurology. 2021;97(7 Suppl 1):S4-S14; doi:10.1212/WNL.0000000000012430

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

 

Patient-Reported Outcomes

 

Patient-reported outcomes in neurofibromatosis and schwannomatosis clinical trials

Wolters PL, Martin S, Merker VL, Gardner KL, Hingtgen CM, Tonsgard JH, Schorry EK, Baldwin A, for the REiNS International Collaboration. Patient-reported outcomes in neurofibromatosis and schwannomatosis clinical trials. Neurology. 2013;81(21 Suppl 1):S6-14; doi:10.1212/01.wnl.0000435747.02780.bf

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

 

Patient-reported outcomes of pain and physical functioning in neurofibromatosis clinical trials

Wolters PL, Martin S, Merker VL, Tonsgard JH, Solomon SE, Baldwin A, Bergner AL, Walsh K, Thompson HL, Gardner KL, Hingtgen CM, Schorry E, Dudley WN, Franklin B, for the REiNS International Collaboration. Patient-reported outcomes of pain and physical functioning in neurofibromatosis clinical trials. Neurology. 2016;87(7 Suppl 1):S4-S12; doi:10.1212/WNL.0000000000002927

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

 

Patient Report of Hearing in Neurofibromatosis Type 2: Recommendations for Clinical Trials

Thompson HL, Blanton A, Franklin B, Merker VL, Franck KH, Welling DB, on behalf of the REiNS International Collaboration. Patient Report of Hearing in Neurofibromatosis Type 2: Recommendations for Clinical Trials. Neurology. 2021;97(7 Suppl 1):S64-S72; doi:10.1212/WNL.0000000000012424

Abstract            Full Text (Web)             Full Text (PDF)      NF2

 

Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

Wolters PL, Vranceanu AM, Thompson HL, Martin S, Merker VL, Baldwin A, Barnett C, Koetsier KS, Hingtgen CM, Funes CJ, Tonsgard JH, Schorry EK, Allen T, Smith T, Franklin B, Reeve S, on behalf of the REiNS International Collaboration. Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials. Neurology. 2021;97(7 Suppl 1):S50-S63; doi:10.1212/WNL.0000000000012421

Abstract            Full Text (Web)             Full Text (PDF)      NF1  NF2  SWN

 



Last updated by Baker, Melissa (NIH/NCI) [F] on Mar 07, 2022