Table 9. Studies using the registry for recruitment.

	Start Date	Population	Type of study	Email sent	Email opened(%)
1	Apr 2013	NF1, Tibial bowing	Observational	256	10541%
2	Mar 2014	NF1, NF2—Adult	Intervention: Behavioral	1465	5538%
3	May 2014	NF1, NF2—Adolescent	Observational: Focus Group	813	24730%
4	Sep 2015	NF1, NF2—Adolescent	Intervention: Behavioral	1840	59532%
5	Jul 2015	NF1, ages 16–34, plexiform neurofibroma	Intervention: Behavioral	1019	27127%
6	May 2015	NF1, ages 3–31, MPNST	Intervention: Drug -Phase II	668	29042%
7	Mar 2015	NF2, ages 12–40,vestibular schwannoma	Intervention: Drug –Phase II	141	4733%
8	Dec 2014	NF1, ages2-18,plexiform neurofibroma	Observational- Focus group	366	10128%
9	Apr 2015	NF1 ages 8–12, plexiform neurofibroma	Observational- Focus group	154	4429%
10	Jun 2015	NF1 ages 5–7,plexiform neurofibroma	Observational- Focus group	640	25139%
11	May 2013	NF1 ages 7–16	Observational	500	27254%
12	Mar 2014	NF1, MPNST*	Intervention: Radiation	39	1846%
13	Jul 2013	NF1, breast cancer	Observational	3	267%
14	Feb 2015	NF1, parents of affectedchildren	Observational	1605	65741%
15	Mar 2016	NF1, Adult, UK,plexiform neurofibroma	Observational: QoLquestionnaire development	37	12 32%
16	Mar 2015	NF1, pain	Observational: Questionnairedevelopment	3187	113335%
17	Oct 2015	NF1, NF2, SCHW	Analysis of registry data,clinic accessibility	4617	NA
18	Sep 2015	NF1 pediatric	Observational: QoL fieldtesting	3574	118833%

MPNST* = Malignant Peripheral Nerve Sheath Tumor.