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Vanessa Leigh Merker, Ph.D.

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Biography
Brown UniversityBSCognitive Neuroscience
Boston University School of Public HealthPhDHealth Services Research

Overview
I'm a health services researcher committed to improving healthcare for people with rare diseases by leveraging information collected directly from patients and their family members. My research focus is improving the accessibility, quality, and patient-centeredness of care for patients with the neurofibromatoses. To do this, I use qualitative and mixed methods to understand patients healthcare needs and experiences; I develop and use patient reported outcome measures for use in clinical trials; and I engage patients as partners in the design and conduct of my research. I am highly experienced in neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis, and have broad interests across neurology and oncology.

Mentoring
Available: 03/31/22, Expires: 03/01/23

The neurofibromatoses (NF) including neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis are a group of rare, genetic diseases which cause benign tumors of the nervous system along with many other physical, mental, and cognitive symptoms. Currently, there is no cure for these diseases and surgery is the mainstay of treatment, but new drug therapies are being tested in clinical trials. Mass General has one of the largest NF clinics in the U.S., but many NF patients do not have access to this type of specialized clinic. Available research opportunities in Dr. Merker’s lab, housed in the MGH NF clinic, center around 1) qualitative research to understand NF patients healthcare priorities and needs, and 2) systematic literature reviews identifying effective interventions to improve health services for people with rare diseases. We would like to start a new project qualitatively analyzing social media posts in NF communities (like on Reddit) in order to see what concerns people with NF have, whether these concerns are accurately addressed in social media venues, and how these concerns do (or do not) align with existing clinical trial topics, patient reported outcome measures and clinical care guidelines. We are looking for a student(s) interested in qualitative methods to help lead this research effort and accompanying peer-reviewed paper. The student would be responsible for pulling social media posts, coding the content of posts, participating in qualitative analysis of the posts including comparison to clinical data sources, and helping draft presentations/papers about the findings. There may also be opportunities to collaborate on ongoing qualitative research developing patient-reported outcome measures for NF and understanding patient experience on clinical trials. No prior experience in qualitative research or neurofibromatosis is necessary; hands-on training in qualitative coding and analysis will be provided by Dr. Merker. We are also seeking students interested in participating in systematic reviews of the literature on psychosocial and health services interventions likely to be applicable across rare diseases. Our lab has already begun developing a core systematic review protocol, and there are opportunities for students to collaborate on our initial paper on health services interventions as well as build off our initial search strategy to lead new papers investigating specific types of interventions (e.g. psychosocial interventions) or outcomes of interest (e.g. shared decision-making, satisfaction with care). No experience in systematic reviews or rare disease necessary; hands-on training in use of Covidence software and systematic review protocols can be provided by Dr. Merker and the MGH Treadwell library.


Research
The research activities and funding listed below are automatically derived from NIH ExPORTER and other sources, which might result in incorrect or missing items. Faculty can login to make corrections and additions.
  1. (Merker) Mar 1, 2023 - Feb 28, 2026
    Neurofibromatosis Northeast
    Expanding Patient-Centered Outcome Assessment in an NF Consortium Trial of Selumetinib plus Cabozantinib for Growing or Symptomatic Plexiform Neurofibromas: A Qualitative Interview Study
    Role Description: The goal of this study is to add longitudinal, qualitative interviews with NF1 patients to the NF113 clinical trial to understand patients' perceptions of the benefits, risks, and tolerability of combination treatment for plexiform neurofibromas.
    Role: Principal Investigator
  2. Clinical Research Award 2020-10-001 (Merker, Vanessa) Mar 1, 2021 - Feb 28, 2023
    Children's Tumor Foundation
    Incorporating FDA Guidance on Patient-Focused Drug Development in NF: A Pilot Study of Qualitative Patient Interviews within NF Clinical Trials
    Role Description: The goal of this study is to use longitudinal, qualitative interviews with NF2 patients enrolled in the brigatinib sub-study of the INTUITT-NF2 clinical trial to 1) improve the trial’s ability to assess the efficacy of brigatinib in treating progressive NF2-related tumors, 2) assess the content validity of and meaningful change within the NF2 Impact on Quality of Life scale; and 3) identify best practices for embedding qualitative interviews into multicenter NF clinical trials
    Role: PI
  3. Locally Initiated Project 19-004 (Merker, Vanessa) Jun 1, 2019 - Dec 31, 2019
    Veterans Administration Center for Healthcare Organization and Implementation Research
    Understanding the Impact of Veteran Engagement in Research
    Role Description: The goal of this project was to undertake a qualitative evaluation of the Veteran Consulting Network to understand the impact of Veteran engagement in health services research and identify potentially measurable outputs of patient engagement.
    Role: PI
  4. Young Investigator Award 2015-01-005 (Merker, Vanessa) Aug 1, 2015 - Jul 31, 2018
    Children’s Tumor Foundation
    Understanding Diagnostic Delay in Schwannomatosis: A Patient-Centered Approach
    Role Description: The goal of this project was to understand patient, provider, and healthcare-system level factors associated with diagnostic delay in schwannomatosis using a mixed-methods, patient-centered approach
    Role: PI

Featured Content

Bibliographic
Publications listed below are automatically derived from MEDLINE/PubMed and other sources, which might result in incorrect or missing publications. Faculty can login to make corrections and additions.
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PMC Citations indicate the number of times the publication was cited by articles in PubMed Central, and the Altmetric score represents citations in news articles and social media. (Note that publications are often cited in additional ways that are not shown here.) Fields are based on how the National Library of Medicine (NLM) classifies the publication's journal and might not represent the specific topic of the publication. Translation tags are based on the publication type and the MeSH terms NLM assigns to the publication. Some publications (especially newer ones and publications not in PubMed) might not yet be assigned Field or Translation tags.) Click a Field or Translation tag to filter the publications.
  1. Plotkin SR, Messiaen L, Legius E, Pancza P, Avery RA, Blakeley JO, Babovic-Vuksanovic D, Ferner R, Fisher MJ, Friedman JM, Giovannini M, Gutmann DH, Hanemann CO, Kalamarides M, Kehrer-Sawatzki H, Korf BR, Mautner VF, MacCollin M, Papi L, Rauen KA, Riccardi V, Schorry E, Smith MJ, Stemmer-Rachamimov A, Stevenson DA, Ullrich NJ, Viskochil D, Wimmer K, Yohay K, Huson SM, Wolkenstein P, Evans DG. Updated diagnostic criteria and nomenclature for neurofibromatosis type 2 and schwannomatosis: An international consensus recommendation. Genet Med. 2022 Sep; 24(9):1967-1977. PMID: 35674741.
    Citations: 1     Fields:    
  2. Merker VL, Slobogean B, Jordan JT, Langmead S, Meterko M, Charns MP, Elwy AR, Blakeley JO, Plotkin SR. Understanding barriers to diagnosis in a rare, genetic disease: Delays and errors in diagnosing schwannomatosis. Am J Med Genet A. 2022 Sep; 188(9):2672-2683. PMID: 35678462; PMCID: PMC9378587.
    Citations:    Fields:    
  3. Merker VL, Hyde JK, Herbst A, Solch AK, Mohr DC, Gaj L, Dvorin K, Dryden EM. Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network. J Gen Intern Med. 2022 04; 37(Suppl 1):33-41. PMID: 35349028; PMCID: PMC8993982.
    Citations: 1     Fields:    Translation:Humans
  4. Merker VL, Knight P, Radtke HB, Yohay K, Ullrich NJ, Plotkin SR, Jordan JT. Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists. Orphanet J Rare Dis. 2022 02 10; 17(1):44. PMID: 35144646; PMCID: PMC8832755.
    Citations:    Fields:    Translation:Humans
  5. Wolters PL, Reda S, Martin S, Al Ghriwati N, Baker M, Berg D, Erickson G, Franklin B, Merker VL, Oberlander B, Reeve S, Rohl C, Rosser T, Toledo-Tamula MA, Vranceanu AM. Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey. Am J Med Genet A. 2022 01; 188(1):71-82. PMID: 34536052; PMCID: PMC8652613.
    Citations: 2     Fields:    Translation:HumansCells
  6. Bloeser K, McCarron KK, Merker VL, Hyde J, Bolton RE, Anastasides N, Petrakis BA, Helmer DA, Santos S, Litke D, Pigeon WR, McAndrew LM. "Because the country, it seems though, has turned their back on me": Experiences of institutional betrayal among veterans living with Gulf War Illness. Soc Sci Med. 2021 09; 284:114211. PMID: 34271400.
    Citations: 1     Fields:    Translation:Humans
  7. Merker VL, Lessing AJ, Moss I, Hussey M, Oberlander B, Rose T, Thalheimer R, Wirtanen T, Wolters PL, Gross AM, Plotkin SR. Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement: Lessons From REiNS. Neurology. 2021 08 17; 97(7 Suppl 1):S4-S14. PMID: 34230208; PMCID: PMC8594004.
    Citations:    Fields:    Translation:Humans
  8. 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. Validating Techniques for Measurement of Cutaneous Neurofibromas: Recommendations for Clinical Trials. Neurology. 2021 08 17; 97(7 Suppl 1):S32-S41. PMID: 34230197.
    Citations:    Fields:    Translation:Humans
  9. 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. Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials. Neurology. 2021 08 17; 97(7 Suppl 1):S50-S63. PMID: 34230198; PMCID: PMC8594008.
    Citations: 1     Fields:    Translation:Humans
  10. Thompson HL, Blanton A, Franklin B, Merker VL, Franck KH, Welling DB. Patient Report of Hearing in Neurofibromatosis Type 2: Recommendations for Clinical Trials. Neurology. 2021 08 17; 97(7 Suppl 1):S64-S72. PMID: 34230203; PMCID: PMC8594003.
    Citations:    Fields:    Translation:Humans
  11. Legius E, Messiaen L, Wolkenstein P, Pancza P, Avery RA, Berman Y, Blakeley J, Babovic-Vuksanovic D, Cunha KS, Ferner R, Fisher MJ, Friedman JM, Gutmann DH, Kehrer-Sawatzki H, Korf BR, Mautner VF, Peltonen S, Rauen KA, Riccardi V, Schorry E, Stemmer-Rachamimov A, Stevenson DA, Tadini G, Ullrich NJ, Viskochil D, Wimmer K, Yohay K, Huson SM, Evans DG, Plotkin SR. Revised diagnostic criteria for neurofibromatosis type 1 and Legius syndrome: an international consensus recommendation. Genet Med. 2021 08; 23(8):1506-1513. PMID: 34012067; PMCID: PMC8354850.
    Citations: 32     Fields:    Translation:Humans
  12. Radtke HB, Klein-Tasman BP, Merker VL, Knight P, Ullrich NJ, Jordan JT, Korf B, Plotkin SR. The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research. Orphanet J Rare Dis. 2021 02 01; 16(1):61. PMID: 33522938.
    Citations: 5     Fields:    Translation:HumansCellsPHPublic Health
  13. Merker VL, Plotkin SR, Charns MP, Meterko M, Jordan JT, Elwy AR. Effective provider-patient communication of a rare disease diagnosis: A qualitative study of people diagnosed with schwannomatosis. Patient Educ Couns. 2021 04; 104(4):808-814. PMID: 33051127; PMCID: PMC8004534.
    Citations: 2     Fields:    Translation:Humans
  14. Merker VL, Dai A, Radtke HB, Knight P, Jordan JT, Plotkin SR. Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis. BMC Health Serv Res. 2018 Aug 29; 18(1):668. PMID: 30157837.
    Citations: 6     Fields:    Translation:Humans
  15. Huang V, Bergner AL, Halpin C, Merker VL, Sheridan MR, Widemann BC, Blakeley JO, Plotkin SR. Improvement in Patient-reported Hearing After Treatment With Bevacizumab in People With Neurofibromatosis Type 2. Otol Neurotol. 2018 06; 39(5):632-638. PMID: 29649040; PMCID: PMC6642810.
    Citations: 5     Fields:    Translation:HumansCTClinical Trials
  16. Jordan JT, Smith MJ, Walker JA, Erdin S, Talkowski ME, Merker VL, Ramesh V, Cai W, Harris GJ, Bredella MA, Seijo M, Suuberg A, Gusella JF, Plotkin SR. Pain correlates with germline mutation in schwannomatosis. Medicine (Baltimore). 2018 Feb; 97(5):e9717. PMID: 29384852; PMCID: PMC5805424.
    Citations: 5     Fields:    Translation:Humans
  17. Merker VL, McDannold S, Riklin E, Talaei-Khoei M, Sheridan MR, Jordan JT, Plotkin SR, Vranceanu AM. Health literacy assessment in adults with neurofibromatosis: electronic and short-form measurement using FCCHL and Health LiTT. J Neurooncol. 2018 Jan; 136(2):335-342. PMID: 29119424.
    Citations: 2     Fields:    Translation:Humans
  18. Riklin E, Talaei-Khoei M, Merker VL, Sheridan MR, Jordan JT, Plotkin SR, Vranceanu AM. First report of factors associated with satisfaction in patients with neurofibromatosis. Am J Med Genet A. 2017 03; 173(3):671-677. PMID: 28211981.
    Citations: 4     Fields:    Translation:Humans
  19. Talaei-Khoei M, Riklin E, Merker VL, Sheridan MR, Jordan JT, Plotkin SR, Vranceanu AM. First use of patient reported outcomes measurement information system (PROMIS) measures in adults with neurofibromatosis. J Neurooncol. 2017 01; 131(2):413-419. PMID: 27900643.
    Citations: 7     Fields:    Translation:Humans
  20. Ostrow KL, Bergner AL, Blakeley J, Evans DG, Ferner R, Friedman JM, Harris GJ, Jordan JT, Korf B, Langmead S, Leschziner G, Mautner V, Merker VL, Papi L, Plotkin SR, Slopis JM, Smith MJ, Stemmer-Rachamimov A, Yohay K, Belzberg AJ. Creation of an international registry to support discovery in schwannomatosis. Am J Med Genet A. 2017 Feb; 173(2):407-413. PMID: 27759912.
    Citations: 6     Fields:    Translation:HumansPHPublic Health
  21. 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. Patient-reported outcomes of pain and physical functioning in neurofibromatosis clinical trials. Neurology. 2016 Aug 16; 87(7 Suppl 1):S4-S12. PMID: 27527648; PMCID: PMC5578357.
    Citations: 16     Fields:    Translation:Humans
  22. Vranceanu AM, Riklin E, Merker VL, Macklin EA, Park ER, Plotkin SR. Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT. Neurology. 2016 Aug 23; 87(8):806-14. PMID: 27449066.
    Citations: 32     Fields:    Translation:Humans
  23. Merker VL, Bergner AL, Vranceanu AM, Muzikansky A, Slattery W, Plotkin SR. Health-related Quality of Life of Individuals With Neurofibromatosis Type 2: Results From the NF2 Natural History Study. Otol Neurotol. 2016 06; 37(5):574-9. PMID: 27050651.
    Citations: 8     Fields:    Translation:Humans
  24. Blakeley JO, Ye X, Duda DG, Halpin CF, Bergner AL, Muzikansky A, Merker VL, Gerstner ER, Fayad LM, Ahlawat S, Jacobs MA, Jain RK, Zalewski C, Dombi E, Widemann BC, Plotkin SR. Efficacy and Biomarker Study of Bevacizumab for Hearing Loss Resulting From Neurofibromatosis Type 2-Associated Vestibular Schwannomas. J Clin Oncol. 2016 05 10; 34(14):1669-75. PMID: 26976425; PMCID: PMC4872317.
    Citations: 34     Fields:    Translation:HumansCTClinical Trials
  25. Farschtschi S, Merker VL, Wolf D, Schuhmann M, Blakeley J, Plotkin SR, Hagel C, Mautner VF. Bevacizumab treatment for symptomatic spinal ependymomas in neurofibromatosis type 2. Acta Neurol Scand. 2016 Jun; 133(6):475-80. PMID: 26369495.
    Citations: 7     Fields:    Translation:Humans
  26. Horný M, Morgan JR, Merker VL. Using Medical Claims for Policy Effectiveness Surveillance: Reimbursement and Utilization of Abdomen/Pelvis Computed Tomography Scans. Health Serv Res. 2015 Dec; 50(6):1910-26. PMID: 25752473.
    Citations: 4     Fields:    Translation:Humans
  27. Terry AR, Merker VL, Barker FG, Leffert L, Bateman BT, Souter I, Plotkin SR. Pregnancy complications in women with rare tumor suppressor syndromes affecting central and peripheral nervous system. Am J Obstet Gynecol. 2015 Jul; 213(1):108-109. PMID: 25687565.
    Citations: 3     Fields:    Translation:Humans
  28. Vranceanu AM, Merker VL, Park ER, Plotkin SR. Quality of life among children and adolescents with neurofibromatosis 1: a systematic review of the literature. J Neurooncol. 2015 Apr; 122(2):219-28. PMID: 25663248.
    Citations: 16     Fields:    Translation:Humans
  29. Park ER, Smith KB, Merker VL, Muzikansky A, Vranceanu AM, Wang DL, Plotkin SR. Examining perceived cancer risk among patients with neurofibromatosis type 1. J Neurooncol. 2015 Mar; 122(1):127-33. PMID: 25559686.
    Citations: 1     Fields:    Translation:Humans
  30. Merker VL, Murphy TP, Hughes JB, Muzikansky A, Hughes MR, Souter I, Plotkin SR. Outcomes of preimplantation genetic diagnosis in neurofibromatosis type 1. Fertil Steril. 2015 Mar; 103(3):761-8.e1. PMID: 25557241.
    Citations: 2     Fields:    Translation:Humans
  31. Vranceanu AM, Merker VL, Plotkin SR, Park ER. The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study. J Neurooncol. 2014 Oct; 120(1):103-9. PMID: 25022450.
    Citations: 23     Fields:    Translation:Humans
  32. Urban T, Lim R, Merker VL, Muzikansky A, Harris GJ, Kassarjian A, Bredella MA, Plotkin SR. Anatomic and metabolic evaluation of peripheral nerve sheath tumors in patients with neurofibromatosis 1 using whole-body MRI and (18)F-FDG PET fusion. Clin Nucl Med. 2014 May; 39(5):e301-7. PMID: 24152623.
    Citations: 7     Fields:    Translation:Humans
  33. Slusarz KM, Merker VL, Muzikansky A, Francis SA, Plotkin SR. Long-term toxicity of bevacizumab therapy in neurofibromatosis 2 patients. Cancer Chemother Pharmacol. 2014 Jun; 73(6):1197-204. PMID: 24710627.
    Citations: 22     Fields:    Translation:Humans
  34. Merker VL, Bredella MA, Cai W, Kassarjian A, Harris GJ, Muzikansky A, Nguyen R, Mautner VF, Plotkin SR. Relationship between whole-body tumor burden, clinical phenotype, and quality of life in patients with neurofibromatosis. Am J Med Genet A. 2014 Jun; 164A(6):1431-7. PMID: 24664633.
    Citations: 19     Fields:    Translation:Humans
  35. Plotkin SR, Merker VL, Muzikansky A, Barker FG, Slattery W. Natural history of vestibular schwannoma growth and hearing decline in newly diagnosed neurofibromatosis type 2 patients. Otol Neurotol. 2014 Jan; 35(1):e50-6. PMID: 24335938.
    Citations: 23     Fields:    Translation:Humans
  36. Wolters PL, Martin S, Merker VL, Gardner KL, Hingtgen CM, Tonsgard JH, Schorry EK, Baldwin A. Patient-reported outcomes in neurofibromatosis and schwannomatosis clinical trials. Neurology. 2013 Nov 19; 81(21 Suppl 1):S6-14. PMID: 24249806; PMCID: PMC3908341.
    Citations: 18     Fields:    Translation:Humans
  37. Vranceanu AM, Merker VL, Park E, Plotkin SR. Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature. J Neurooncol. 2013 Sep; 114(3):257-62. PMID: 23817811.
    Citations: 26     Fields:    Translation:Humans
  38. Nunes FP, Merker VL, Jennings D, Caruso PA, di Tomaso E, Muzikansky A, Barker FG, Stemmer-Rachamimov A, Plotkin SR. Bevacizumab treatment for meningiomas in NF2: a retrospective analysis of 15 patients. PLoS One. 2013; 8(3):e59941. PMID: 23555840.
    Citations: 25     Fields:    Translation:Humans
  39. Smith MJ, Esparza S, Merker VL, Muzikansky A, Bredella MA, Harris GJ, Kassarjian A, Cai W, Walker JA, Mautner VF, Plotkin SR. Plasma S100ß is not a useful biomarker for tumor burden in neurofibromatosis. Clin Biochem. 2013 May; 46(7-8):698-700. PMID: 23261835.
    Citations: 1     Fields:    Translation:Humans
  40. van Eeghen AM, Pulsifer MB, Merker VL, Neumeyer AM, van Eeghen EE, Thibert RL, Cole AJ, Leigh FA, Plotkin SR, Thiele EA. Understanding relationships between autism, intelligence, and epilepsy: a cross-disorder approach. Dev Med Child Neurol. 2013 Feb; 55(2):146-53. PMID: 23205844.
    Citations: 56     Fields:    Translation:Humans
  41. Merker VL, Esparza S, Smith MJ, Stemmer-Rachamimov A, Plotkin SR. Clinical features of schwannomatosis: a retrospective analysis of 87 patients. Oncologist. 2012; 17(10):1317-22. PMID: 22927469.
    Citations: 61     Fields:    Translation:Humans
  42. Plotkin SR, Merker VL, Halpin C, Jennings D, McKenna MJ, Harris GJ, Barker FG. Bevacizumab for progressive vestibular schwannoma in neurofibromatosis type 2: a retrospective review of 31 patients. Otol Neurotol. 2012 Aug; 33(6):1046-52. PMID: 22805104.
    Citations: 78     Fields:    Translation:Humans
  43. Plotkin SR, Bredella MA, Cai W, Kassarjian A, Harris GJ, Esparza S, Merker VL, Munn LL, Muzikansky A, Askenazi M, Nguyen R, Wenzel R, Mautner VF. Quantitative assessment of whole-body tumor burden in adult patients with neurofibromatosis. PLoS One. 2012; 7(4):e35711. PMID: 22558206.
    Citations: 58     Fields:    Translation:Humans
  44. Jaremko JL, MacMahon PJ, Torriani M, Merker VL, Mautner VF, Plotkin SR, Bredella MA. Whole-body MRI in neurofibromatosis: incidental findings and prevalence of scoliosis. Skeletal Radiol. 2012 Aug; 41(8):917-23. PMID: 22146869.
    Citations: 13     Fields:    Translation:Humans
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Funded by the NIH National Center for Advancing Translational Sciences through its Clinical and Translational Science Awards Program, grant number UL1TR002541.